Navigating the Chapters of Challenge with Tele

When pain isn't just "normal": Christina's Battle with Endometriosis and Fibroids

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Christina's powerful journey through endometriosis and fibroids reveals the silent battle many women face when severe pain is dismissed as "normal." As a dietitian and professional, she never expected to become the patient navigating a complex medical maze that would ultimately change the course of her life.

From mysterious bladder symptoms to devastating diagnoses, Christina walks us through her decade-long battle that included multiple surgeries, a shocking discovery of endometriosis during fibroid treatment, and eventually losing a kidney, ovary, fallopian tube, and appendix to this progressive condition. Her raw emotion surfaces when discussing how these health challenges altered her expectations about fertility and her future—a grief process many chronic illness warriors understand all too well.

What makes this conversation extraordinary isn't just Christina's medical journey but her powerful testimony of resilience. She shares how faith sustained her through eight-hour surgeries and waking up to news that more organs had been removed. The moment her surgeon used the exact words from her sister's prayer—"we were gentle with you, we took care"—stands as a profound spiritual marker in her story.

Beyond her personal experience, Christina offers valuable insights for anyone supporting loved ones through health crises. She emphasizes the importance of simply listening without trying to "fix" the situation, allowing people to process their changing emotions, and creating space for both vulnerability and strength. Her practical advice about seeking specialist care, joining support forums, and dietary approaches provides a roadmap for others facing similar diagnoses.

The conversation serves as a wake-up call about women's health—revealing how endometriosis affects one in ten women worldwide yet takes an average of eight years to diagnose. Christina's willingness to share her story breaks the silence around conditions often hidden from public view and empowers others to advocate for themselves when symptoms are dismissed. Listen now and discover how to navigate life's most challenging chapters with grace, community support, and unwavering hope.

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Speaker 1:

Thank you, hello, and welcome to Navigating the Chapters of Challenge with Tele. Today I've got Christina in the house with me and I'm really excited to have Christina here. I'm meeting her for the first time, but it's as if I've known her for a while now. So that's really good, and we're going to be talking about a topic that I don't know much about it, so Christina is really going to fill us in about this topic. Before we start, I'm going to ask Christina to introduce herself, say hello to everyone, and then we'll take it from there.

Speaker 2:

Thank you. My name is Christina, I'm a dietitian, I'm a senior lecturer, I what should I say?

Speaker 1:

I'm a dietician, I'm senior lecturer, I'm a Christian Christian of 25 years now, I think and excited to come and share some of my story and just inform, talking about endometriosis and fibroids. And actually march is, from what I just found out, march is the awareness month for endometriosis. I don't know if it's a worldwide thing or just in the uk, but it's awareness month, so this is a good time for us to be talking about endometriosis and apparently affects one in 10 people around the world. I'm not sure about my stats, so Christina would enlighten us some more. So, christina, what exactly is endometriosis? I really don't know much about it, so if you could just fill us in on what endometriosis is.

Speaker 2:

So endometriosis is a gynecological condition. It's where the cells that would usually line our uterine wall. These cells can fall outside of that space, and so they can end up in other areas of our body, so perhaps the bladder, bowel, other, because in the pelvic area there's lots of organs together, particularly for us as women, so they can also end up in areas like our ovaries, and then this can cause inflammation and scarring too, and so that can lead to women experiencing things like pain. That's quite common with endometriosis pelvic pain, which can impact women's daily lives. It could be heavy bleeding as well, so pain is probably one of the key symptoms related to endometriosis, as well as things like your heavy menstrual bleeding.

Speaker 1:

So can you take us back to when you first started experiencing symptoms?

Speaker 2:

and what was the?

Speaker 1:

journey like getting the diagnosis.

Speaker 2:

So my journey, it's a long journey, so I'll have to keep it brief. My journey actually started through fibroids, okay, um, and so it was through fibroids and having treatment for fibroids that endometriosis was found, and so, uh, if people are not aware of fibroids, fibroids are where you have, um, a benign growth, and that, uh, you can have a benign growth in your uterus, otherwise known as your womb, and so these growths, they're non-cancerous. They vary in size, so they could be the size of a pea.

Speaker 2:

Doctors used to refer to the size related to, I guess, vegetables and fruits I don't know why so it could be the size of a pea up to a melon, for example, or grapefruit. Why, so it could be the size of a pea up to a melon, for example, or grapefruit. Um, often they now, if you've got letters, you've had scans done they might refer to the size, uh, related to what the size of the womb would be if you were pregnant. So, um, I think one of my scans at the time said it was the size of a woman who would be 16 to 18 weeks pregnant so that's the size of the fibroid, the, the size of the fibroids and how much they were expanding my womb.

Speaker 2:

Okay, yeah, um, and so I my initial, one of the things I was thinking about when I had prayed about what to share, and something I did want to initially start with saying, was that for many of us I don't know how women would feel listening to this we felt that certain symptoms we were experiencing were normal, yeah, and so things like pain, um, and heavy bleeding we just thought that was normal. And so I always had pain around my periods. Um, sometimes it would, be uh, severe enough that I couldn't do some of the usual things I might want to do, like go, you know, go and and get out. It would be bad, I'd want to stay home, um, and then my periods. I mean, what does heavy mean?

Speaker 2:

You know, some of us, our flow, we're changing paths all the time and perhaps leaking through into your clothes, needing to be conscious about things that you might do or clothes you might wear, because you're worried that it could show through. So things like that were just normal for me. It was just how I planned my life, and I remember speaking to friends at the time and that was normal for them too. Yeah, but actually when you're in severe pain from your periods, it's not normal, and so I think we need to speak up about that more and to say if you're experiencing severe pain round about your periods before or after as well you should really go and speak to your doctor and um see if they could do some investigations and keep advocating for yourself, because I think often um, we, we try and plow through and we tell each other you know, it's just your periods it's just what happens as a woman you just get on with it.

Speaker 2:

You go to work, you take care of the family, whatever it is that you should be doing, but we shouldn't be accepting that because it's not. It's not normal, um, and so that's the first thing to say. I think, and what happened with me is my symptoms started changing and, um, it was through the changing symptoms. I started then questioning I don't think this is right. So I started experiencing symptoms related to my bladder, um, so I started getting um bladder pain when I was urinating, urgency to urinate um, I hope this is not too much information for some people. I guess it's just my journey to share leakage. So I wasn't able to hold in if I had a sudden urge to urinate. And so I would go to the doctor and say, look, I've got this pain, urinating urgency. They'd say, okay, we think you've got this pain urinating urgency. They'd say, okay, we think you've got an infection.

Speaker 2:

So, they'd give me antibiotics. So, I'd go away and then I was also some occasions having constipation and some gastrointestinal symptoms. So then I'd go back to the GP and they'd say, oh, it could be this. And I kept going back with these different symptoms and the doctor's saying maybe it's antibiotics, maybe it's this, maybe it's that you need antibiotics. It could be an infection. And I just felt up to this point I thought my health has always been fine. Why am I continuing to go to the doctor all the time?

Speaker 2:

And I didn't feel like anybody was really listening and piecing the pieces together and it wasn't until, I think, I saw a doctor who I just felt she really fobbed me off and I said look, these are some of the things I'm experiencing there. I was having some pelvic pain as well. The bladder symptoms were on and off, but I was having some pelvic pain, constipation, and she said, oh, it sounds like it's just IBS. And then she gave me a leaflet and she said, oh, it sounds like it's just IBS.

Speaker 2:

And then she gave me a leaflet and she sent me off with nothing else. You know, no referral, no, see this person. They could talk you through.

Speaker 1:

No scan or anything like that.

Speaker 2:

No scan. She didn't even check if I knew what IBS was, you know. So after that I reflected and thought this isn't right. You know what's going on here. This is different. So I I decided I would self-diagnose. I did what many people do and went to Google.

Speaker 1:

Big mistake, yeah, and it.

Speaker 2:

So I pulled all my symptoms, you know, started Googling and trying to understand what, um, what condition is linking all of these symptoms together. And so I found a condition which wasn't what I had, but it's something called interstitial cystitis. So I thought, well, maybe that's what it is, yeah. So I decided I was going to print off some information, take it to my a GP who I'd seen before, and she seemed to be one who listened more. So I think she's gonna help. You know, all I need is to say this is what I think I have. I need you to diagnose this and give me some treatment or whatever.

Speaker 2:

So that was what I was thinking about. So I booked an appointment with this doctor. I I took my printed leaflet. I said, look, this is what I have. I just need you to agree what's the plan. So then she was thinking and she said, okay, I don't think this is what you have. But then she did an investigation of my pelvic area and she said I'm going to refer you to a gynecologist. So I said finally okay, things are moving. Good thing you checked on.

Speaker 1:

Google.

Speaker 2:

Yeah, and the thing before I continue with my story, with endometriosis in particular, I think the evidence base is that it can take eight. I think it's eight to ten years for a diagnosis. If I'm not corrected, I think on average it's eight years. Okay, why is that?

Speaker 2:

so it is some of what I'm sharing, in that the symptoms can be very similar to other things, of other things and so when you're going and you're saying to the doctors this is what I'm experiencing, they could be diagnosing it as something else or they could just be saying this is what is to be expected as a woman. It's your periods, you know, go away, basically. So that's how it can be misdiagnosed. And women are taking, you know, average of eight years. Is is terrible for, for a first diagnosis.

Speaker 2:

So, um, I was blessed it didn't take that long, but it's been a complex journey. So, um, the gp referred me to a gynecologist and they did a scan of. I had a vaginal ultrasound and they found fibroids and I wasn't too familiar with what fibroids were.

Speaker 2:

I think I'd maybe known some people that had it, but I didn't really understand it. So fast forward to shortening that part of the story. I saw a doctor who said look, you could do watch and wait or you could do surgery. And I felt like the doctor was really pushing me to watch and wait. Okay, but I knew inside I don't want to do. I want this treated you know I want this treated. I want to move forward with my life you know, so I prefer to go for surgery.

Speaker 2:

The fibroid was quite a large fibroid and it was pressing on my bladder, so they felt that that was the reason why I was experiencing the bladder symptoms so I said, look, I want treatment.

Speaker 2:

So they booked me for surgery. I think this is going back 2010 is when I first started pushing um, noticing these problems, and I think I had that first surgery in 2011. So then I went for the surgery and leading up to that, you know, I had people praying for me and I was trying to, you know, seek God for myself. And just someone introduced me to someone from my church at the time who you know, just talked me through what her surgery experience was. You know, I was trying to prepare mentally, emotionally, spiritually so I went to the surgery. They operated. I was hoping I'd wake up. If anyone's been for surgery, you wake up in the recovery room, you know. And I woke up. I was like, okay, great, everything's fine, um, just waiting to hear back that everything was well, yeah, and so they do.

Speaker 2:

One of the treatments for fibroids, if they're doing surgery, is called a myomectomy, so that's where they do. If it's keyhole, they cut small holes in your pelvic area and then try to remove the fibroids. So mine, I think there were some complications, I think it was to do with bleeding, and so they had to during the operation. Yeah, and so it had to turn into an open procedure where it was more of a longer cut. Okay, so they came and they're explaining this to me and then they said look, actually we found endometriosis. We took the fibroids out, that was fine, you know. The fibroids were removed. There was some. We had to turn it into open surgery, but actually we discovered endometriosis. It's really severe so we decided not to touch it.

Speaker 2:

We think it's best that we refer you to a specialist centre, and they gave me two options of London large London hospitals that had specialist centres. So I was lying on the bed thinking hold on a minute. I thought everything was going to be fine, be fine. Yeah, and I've never heard of endometriosis. I don't know what this is. I thought that this problem would be solved having the surgery. Now it sounds like it's a bigger can of worms.

Speaker 1:

Did they explain what?

Speaker 2:

it was to you at that point. They may have done, but I was all hazy at the time. They they may have done. They gave me an information leaflet because I was looking back through my paperwork to prepare and I found an old information leaflet but nobody I knew had endometriosis. People I knew had fibroids but nobody had endometriosis. People I knew had fibroids but nobody had endometriosis. So I couldn't even go and ask somebody and share and hear from the experience, because nobody who I knew had ever heard of it before. Family members hadn't heard of it before.

Speaker 2:

So they gave me an option of where to be referred to and I chose a particular hospital that was more closely, um, close to me in terms of location and so they referred me to a consultant there who he was a really blessing. I, I think, thinking about the journey number one, that I chose to go for treatment and have the surgery. I knew deep down I should have the surgery and had I not had the surgery and done, watch and wait, my symptoms could have continued to worsen without any treatment and I could have been one of those stats of eight years down the line you haven't had a diagnosis. So actually pushing to have that initial surgery for the fibroids is what unlocked this additional problem that was happening, that I wouldn't have known um, and so I had to go for lots of investigations that the consultant I was referred to um at the.

Speaker 2:

So it's, I think the landscape has changed a little bit now, but back this is going back perhaps fifth, ten, more than ten years ago hospitals would have specialist endometriosis centers and so they would treat really complex cases of endometriosis, and one of the thinkings behind them was that endometriosis, because it impacts the pelvic area, other organs in that area can be impacted, so things like your bladder, your bowel, and so you need those specialists to also be involved in the investigations and the treatment, and so having the endometriosis specialist centre enables all of those specialists to work together.

Speaker 2:

And so I would say to women experiencing endometriosis, it's important that you particularly if you have severe, deeply infiltrating endometriosis, which is what I had it's important to make sure you're under a specialist centre where teams can work together, and endometriosis is very complex. Doctors don't always know what they're looking for if you're having scans, and it can't always be picked up in scans as well by your average doctor, and so you do really need to be um under specialist care. I would say don't be fobbed off by your local gynecologist if they don't have experience of endometriosis. Um, that's, that's something to consider, and so I had all these investigations. I had investigations for my, for my bladder, because my consultant wanted to make sure um, what was the cause of some of the bladder issues? Um, it becomes quite invasive really. I remember thinking it must be like when women have babies. I know friends that have had babies have said you know, you just lose all inhibition.

Speaker 1:

At that point you don't really care, you just want the baby out, that's it.

Speaker 2:

And I haven't gone through that process, but I've gone through the process of things are put up, you put in, you People are looking, you know, it's very invasive.

Speaker 2:

So I've gone through quite a lot of invasive investigations to check, you know, and make sure. So I had investigations into the bladder and they also those investigations showed I had an overactive bladder. Alongside there was endometriosis which had infiltrated my bladder lining and so that was causing lots of the bladder symptoms I was experiencing, and so I had a diagnostic laparoscopy. They don't do that as much now from what I've discovered, but the gold standard is to have a diagnostic laparoscopy so that the your team can see the area for themselves and it can support them to plan to do the actual surgery. So I had a diagnostic laparoscopy. I also had a cystoscopy to check my bladder more and check the ureters, things like that, and then I had that surgery. I think it was 2015 prior to that surgery.

Speaker 2:

Another thing that does happen it's common for fibroids and endometriosis is medical treatment, so you can be offered injections that put you into a medical menopause. Oh, and the thinking behind this is that it's supposed to stop the production of estrogen, to make your symptoms more manageable and to reduce the growth in the area, so it's supposed to improve outcomes post-surgery. So I went on an injection called Pr Prostap. There's different ones. G and RH is the umbrella term, but I went on one called Prostap and that put me into medical menopause. I stayed on that for about seven months before I had the main surgery. Do you mind me asking how old you were at that age? So this was 2015. I was probably 33, 32 or 33.

Speaker 1:

So how did that make you feel thinking that they're putting you in menopause at the age of 33?

Speaker 2:

Well, they wrap it all up in, this is going to help the situation, and so I felt like, okay, you're in the medical system. And I felt like, okay, if this is needed, if it's going to improve outcomes, as long as there's no long-term problems. I was like, okay, I'll go with it. Okay, so because once you, what they say is once you stop the injections you're supposed to, your body goes back to normal okay okay, so that was it wasn't a permanent thing.

Speaker 2:

No, it's not a permanent thing um, although I have now got some side effects which I query, but that's that's that's coming to the present day, which I have to get to um, so I had to stay and I think I was on those injections for about seven months. There is another risk, because it stops your production of estrogen. Um, estrogen is really important in terms of our bone health as women. Um, it's one of the reasons why, when we get into menopause natural menopause we can be more at risk of things like osteoporosis. Yeah, because we're not producing oestrogen the same way.

Speaker 2:

So we do have to really be careful with our bone health. Um, but if you're on it for longer than six, I think six months is the standard time it could be prescribed for you take an injection every month. Um, when you're on it for longer or you start getting side effects, they give you an ad back hormone to try to improve things. I didn't have to take the ad back hormone and in that time, because I wasn't symptomatic and I stayed on it for about six months, so I went for the surgery. It was keyhole surgery. Um, it was a long surgery.

Speaker 2:

I was in surgery for eight hours, wow, um, there were three teams involved. There was the gynecology team, the urology team and gastroenterology, because they had to cut away a layer of my bladder because of the endometriosis and how deeply infiltrating it had got into the bladder wall. And then there were concerns that they could pierce my bowel. Was the bowel involved? So they wanted gastroenterology to be there. And then the the impact of the bladder, they wanted urology there. And then, um, I had to have a catheter. So they left me with a catheter which stayed in in for four weeks.

Speaker 1:

Four weeks on a catheter yeah, that must have been really uncomfortable. That thing is awful.

Speaker 2:

It was, I don't remember it being very uncomfortable. I think I just learned to live with it, I think, after all of the other things. I've had the first few days I had drains. I think the first few days I had drains I had bags all over because I had free drains coming out of me and I had the catheter as well. So I think when my family they probably would share better from their perspective. But I think when they came to see me.

Speaker 2:

It was a bit of a shock to have the drain bags, to have catheter, you know, and I lost a little bit of weight. I was, um, I've always been a low weight anyway. I've put on more weight as I've started to age, but, um, I lost, uh, I lost, weight during that time. So I I was, I was slimmer, I went into the underweight body mass index category. So they and they put a stent in as well because of how much of the bladder they had to cut away in terms of the bladder wall In my ureter. They put a stent in because I think the thinking behind that was they were worried about blockage and if the ureters would become blocked, so the stent had to stay in after discharge and then I had to have that removed. So that was quite a full-on procedure.

Speaker 2:

I remember waking up just feeling quite, um, I just just the eight hour surgery. I was like, oh my gosh, I didn't expect it to be that long and it did take me back by surprise. I think there was just lots of emotions I was dealing with. There was something a lot of people at the time were praying for me and I was, you know, going to the word and things like that we could talk about later. There was something that really stuck to me even now is one of my sisters prayed, and when she prayed for me prior to going into the surgery, she prayed that the surgeons, the doctors, everyone who was involved in my care, would be gentle and take care.

Speaker 2:

Yeah, and I remember those specific words. And when I woke up and I was in the hospital bed, I was back on the ward and my consultant came to speak to me to tell me how the surgery had gone and how what they'd done. He said you know, we were really gentle with you, we took care. And there was something about those words that said to me God was here.

Speaker 1:

Confirmation yeah.

Speaker 2:

Yeah, there was a confirmation, Because they're very specific words and they're not words that doctors use. They don't say those things, so for him to say it. I said okay, god is saying he was here so that gave me some some comfort, so I so after that period I was told to prevent any further. So I went home. I had um. The catheter in. The catheter came out after four weeks. I just learned to live with it, so you went on with the catheter yeah, so I had to keep the catheter in and change the bag.

Speaker 2:

You know you had to drain the bag and things like that. Um, how was?

Speaker 1:

that doing that? How did that make you feel?

Speaker 2:

it, it, it's not, I think. To be honest, I think I just kept going. Okay, I don't know if I have a way of shielding things, to protect myself, but I just kept going because I think, if I allow myself to stop to think about, it yeah, then perhaps the weight of the emotion is too much.

Speaker 2:

And so in hospital it was the shock because of the drain bags and things. And then, once they started removing things, I just thought, ok, I've got to live with this. And so at that time I was still off work, recovering. So when I did start feeling a little bit better and going out and meeting friends, I was conscious okay, how am I going to manage? What clothes am I going to wear? Um, are there going to be toilets nearby? How's it going to work? Do I want to go and use a public toilet with the capital?

Speaker 2:

bag so I guess I got quite practical and perhaps the emotion of you know, this is not how I would have wanted things to be was was left. I knew before the surgery I would have to wear the catheter. So I think, had I not known that, that might have been more of a surprise, you know, but I I didn't know they'd done so much preparation and told me what to expect that I think I'd started gearing up before, before that time. So I think that made it easier in terms of um, not allowing that to to overwhelm me, which which it could have done, um. So once the catheter was removed, I I think that was uncomfortable, having the catheter removed, um, but I started to feel, you know, and then, once the stents were also removed, you start to feel like you're coming back to yourself again um, I started to get my energy back.

Speaker 2:

You know a bit again, so that that was good. Um, and the consultant, my consultant gynecologist, had said to prevent further um spread of endometriosis, I should go on the pill. Okay, and I'd never taken the pill before, I wasn't really familiar with the pill and it wasn't, it wouldn't have been something I would have chosen to do. But again, you know, wrapped up in the medical speak, I thought, ok, they seem to know what they're doing.

Speaker 2:

So I started the combined pill, a particular one called Yasmin, which there was evidence for reducing spread of endometriosis. So I started that pill. I think I was on the pill maybe, maybe seven or eight years. It was quite a long time. So I stayed on the combined pill but then my blood pressure got borderline high so we started to.

Speaker 2:

I think it was because of the pill, because I didn't have problems with my blood pressure before, and so the consultant, we decided maybe I should go to the progesterone only pill. So I moved on to that pill but that didn't work well with me.

Speaker 1:

Did the pills help with the pain? Because I heard someone else was talking about endometriosis some time ago and she said the pills were meant to help her with the pain. Did that work in that way for you?

Speaker 2:

yes, when I was on the combined pill I did something called tricycling. So I tricycled the pill and took it for three months back to back and then had a gap during, I mean, I guess, I'd had the surgery. So I would hope that there was a gap between having the surgery and starting the pill. There was a few months and so I wasn't having the same symptoms I used to have. The pain wasn't there. Obviously I started the pill so I wasn't having regular periods, but the pain certainly during that time the pain wasn't there.

Speaker 2:

It is something to consider in terms of the pill Pain certainly during that time the pain wasn't there. It is something to consider in terms of the pill and medication. I'd stick with the pill and they do offer it for symptom management, particularly in relation to pain, and women can get pain relief because the pill is supposed to help, and get pain relief because the pill's supposed to help to. What they say sometimes is it's that up and down of oestrogen during our cycle that causes some of these problems with endometriosis and so the pill sort of regularising that is supposed to help with things like pain. One of the things I'm still on the fence about is it's the pain that tells you there's a problem. What ended up happening is I had to have more surgery, which are after the eight hour surgery yeah, I had another operation last year.

Speaker 2:

Oh wow, and that, uh, that's another story. But all of those years on the pet, on the pill in the background, fibroids grew again and endometriosis spread again, again and so, yes, your pain is managed and you can go out and live and function. Um, and you know, I know women who are very impacted by the pain would be off work and things like that. So taking the pill and being able to function is great, but you then don't know is the endometriosis spreading because you're not feeling?

Speaker 1:

because you're not feeling the pain anymore, because there isn't a.

Speaker 2:

Why else would you be going to the doctor to say something's wrong? There isn't really some of those signs that would tell you something's wrong so that was kind of veiling what was going on in the background yeah, yeah, because what?

Speaker 2:

in the midst of the journey, um, I decided to change career. Okay, so at the time when things, uh, were starting off, before I had that first fibroid surgery, I was working in local government. I was a community engagement worker, um, and I'd studied psychology before, so I was aware of research and and studies. And so when I was initially told I had fibroids, I started doing research and I started finding things that I was questioning. Everyone wants to share. This is going to fix you, you know. But I started thinking, well, what's the evidence base behind that? And then I wanted to know more. I think one of the things that happens with anyone when you have a long-term condition is you want some kind of control, you want to get it back, because you feel like you've lost control, and so I thought, well, maybe my diet and making changes to my diet could, could help positively and so, um, to be honest, I initially started going down a route of mental health, thinking I wanted to become a psychologist again, but then I didn't.

Speaker 2:

That's another story. But I ended up becoming a dietitian and going back to university to study again to do that, and one of the reasons was because I wanted to help.

Speaker 2:

I wanted to help myself, but help others, and so as a dietician, I'd worked with patients with chronic kidney disease and I had an understanding of kidney function and tests to show that the kidney wasn't functioning well. And part of the journey where I got to recently the past few years is I noticed a measure of my kidney function had dropped. And so I kept questioning my doctor because I was like I haven't changed, like why? Why is this dropped? Because it doesn't make sense to me. There's no, there's no real issues that would mean that my kidney function should drop. So nobody could really explain it.

Speaker 2:

But my GP kept monitoring me twice a year. She said let's do that to make sure that we're monitoring and just seeing if there's any changes. I stayed under the specialist endometriosis center so I kept saying to them this is happening, you know, um, and similarly, alongside that, I was experiencing some heavy bleeding again and I've always had iron deficiency anemia, which I think is related to my heavy periods. So, um, long story short, I had to. I pushed for some more scans and I had some scans done and they showed the presence of some fibroids and then they also showed that there was endometriosis on my kidney.

Speaker 1:

Endometriosis on the kidney.

Speaker 2:

Yeah, it's very rare, but you can get endometriosis. It's very rare, but you can get endometriosis. Um very rare cases. It could be in the lungs, you know. So endometriosis can really spread throughout your body. There's a very rare cases.

Speaker 1:

I would never have thought that. I thought it was just in the womb and it could go anywhere.

Speaker 2:

Oh, wow, those cases are rare. Okay, you know they like my case is not everybody's journey. You know mine is severe, for whatever reason mine has been severe so I wouldn't want somebody to think it could be normal but it could happen. And so then, noticing that, I was referred to urology again and they did some investigations, investigations into my kidneys, more specific investigations, and then it showed that my um left kidney wasn't functioning anymore because of um hydronephrosis, so the kidney had become swollen and blocked and urine wasn't draining the kidney anymore and so the function of the kidney was. It was below 20 percent. It was very low for that particular kidney. So the consultant urologist said you, you need to have it removed. It's not.

Speaker 1:

Remove the kidney.

Speaker 2:

Yeah, there's nothing else. It's too late to try and do a procedure where they could try and unblock, because they could If it wasn't so far gone, if the kidney was functioning. At a higher level, they uh. One of the options was that they could put a stent in and try and release the fluid that was blocked inside. But they said, at the level that it's functioning it wasn't going to be viable to do that, to do that so so that was very hard out of my whole journey in terms of how I felt emotions, pain, turmoil this has been the biggest thing to have to deal with because to now be saying you need to take something out um, that was a long process so it took me a while.

Speaker 2:

When they first told me I was crying, um, when I had to tell my family they cried. You know, um, that that was hard. So I left a few months to decide because they were wanting to just have the kidney out. You know, sometimes doctors their compassion and empathy is lacking.

Speaker 1:

I think for them it's just what they do every day.

Speaker 2:

They're used to it.

Speaker 1:

It's just routine for them, but for you, going through it, it's like can't you see what I'm feeling, don't you? Understand what this is doing to me.

Speaker 2:

Yeah, I remember the first time he told me it was like it was nothing. You have to have a kidney removed, that's it. And he sent me off with a leaflet about the procedure, and so I was like oh, it's a shell shock, it's a bomb. It's a bomb has gone off emotionally. And so they were then like okay, when should we book you in?

Speaker 1:

so I was like yeah, give me time to process.

Speaker 2:

I said, hold on, I need to process this because I because it was such a shot I went there just thinking I didn't. I didn't think that was going to be told to me, so I didn't prepare. I've been through so much of this process. I would prepare ahead of time with some questions and things I want to ask, and I left thinking okay, but what does this all mean? Like, do I have to have the kidney out now? How long could I live with the kidney the way it is? So I started having all these questions. So I went back to urology and said, look, I didn't really appreciate how I was told. And then I now have more questions. Can I speak to somebody again? So I. Then they gave me a telephone review with a doctor.

Speaker 2:

And I think maybe they did start to think, maybe we should have done this differently. So, they get. And actually, no, it was the same consultant and he called me on the phone and he he was a much more sympathetic.

Speaker 2:

It gave me more time to ask the questions I had. I think this was 2023. So we're still coming out of COVID and you know that was the pressure on the health service from that. And so he explained things and I said, look, I still want time to think about it and so I don't want to be put down for surgery just yet. So I took some time and just really prayed and just thought about what should I do?

Speaker 2:

And, having you know, they explained the risks, if I kept the kidney in, there's a risk of infection because you've got all of that waste really in the kidney that can't go anywhere. And so if you were just like, just like, well, you're at your age, it's better to do this now than to wait. And then if you do get a bad kidney infection, it could be severe and you'd have to come in and that, could you know, it could be terrible. So I thought, okay, on balance, having prayed, you know, sought wise counsel, I said, okay, I'll go for the procedure. So so then, at the same time, because they'd also found fibroids again in areas of endometriosis they were the two different teams not really talking, so there's three issues now the kidney, yeah, endometriosis and the fibroid.

Speaker 2:

Yeah, and so they. I spoke to my GP, because I just spoke to her about a few things, and so she said well, why don't you have everything together in the same surgery? Because they were the doctors were pushing to have two separate surgeries, and by this stage I think I'd been through four, you know. So I was like I don't want. I've had enough of surgeries, yeah it takes a lot out of you. You have to take time off work to recover.

Speaker 2:

Obviously the emotional yeah toil on you, on your family, your friends. You know so I so, when she said that, I wouldn't have thought of that actually. So I thought, you know, I think that I could, I could stand that. So.

Speaker 2:

I went back to my gynecologist consultant gynecologist at the specialist center and said look, let's just do everything together. This is, this is what I want. And so they then started working together to to have all on the same day, and so we we had this. The surgery took place um march time, so actually this it's not too long this time last year it was 7th of march, I think it was.

Speaker 2:

It's about a year now, yeah actually, so maybe this is something timely, yeah, about coming to share so, um. So they took the kidney out. They took out fibroids this time I guess, along the way, god has been preparing me the whole time. So when I woke up again in hospital, they said to me we've removed the kidney, we took out fibroids. There was lots of bleeding, we treated endometriosis but because of how the endometriosis had impacted certain areas, we've had to remove your right ovary, your right fallopian tube and your appendix wow, all of that, yeah, how did you navigate all this?

Speaker 1:

I mean, I can't imagine it, but how did you? I don't even know how to ask that question, but how did you do it? How did you deal with all of that? What kept you going? Yeah, what kept you going, because it's a lot for one person. I'm sorry. I hope it's okay to ask the question.

Speaker 2:

No, no, yes, yes. The only thing in my mind is God, and I don't want that to be cheesy.

Speaker 1:

Take some time. Sorry, if you need to. I'm sorry about that.

Speaker 2:

I don't want that to be cheesy, because it can be, but I don't know how I would have done it, and support from family and friends. Yeah, I think. Had it been maybe 15 years earlier and I woke up in hospital bed and they'd said we'd had to take all of these things out, I would have, you know, the breakdown would have been even more, but I don't know the the steps of the journey. When I woke up and they'd said we'd had to do all of this in addition, I was like, okay, okay, that doesn't mean it hasn't been hard. That's why I'm crying still.

Speaker 1:

It's okay to cry it's.

Speaker 2:

It's been really hard and I think I wasn't going to share this part of the story, but the fertility part has actually been the one of the hardest having the kidney removed. But then also because already when you have things like fibroids and endometriosis, um, it can impact your fertility Not to say that you can't have children, but it can do. So. I already knew that if I wanted to have children, it would be an impact. And getting to the age that I was when I did the initial first fibroid surgery, which was endometriosis surgery in 2015. Because when you go to the doctors with these kinds of conditions, they start saying to you have a hysterectomy yeah so I was like no, I've always said no, I don't want to have a hysterectomy.

Speaker 2:

Um, because I want to keep children on the table. I've felt a desire that that could be, um, something that would be part of my life journey. So the last time to prepare for this surgery I had last year again, one of the options was have a hysterectomy. So I said no, um, and so, having knowing that I'm in my early 40s, um, I already had those conditions that would impact my fertility and now I only have one ovary and one fallopian tube. Um, that that had, because my whole kind of how I thought my life might be has it's changed. It's changed, and so that and so that this I've been processing this past year and having to pray and journal and be angry at God and, yeah, deal with the impact that this condition has had on me. It's been hard.

Speaker 1:

I can imagine, yeah, I can imagine it's been hard. If there's anyone out there who's going through something like this, how would you encourage them to deal with it? I know you have God, it's not everybody that has that to fall back, yeah yeah, what can you say to to encourage people out there? You know to, just because I I can't imagine how you've dealt with it. Is there anything you could say to encourage anybody out there? Just I don't know.

Speaker 2:

I think, something I did use initially. I don't go so often anymore actually, but I used to go on some forums. So there's a forum linked to the organisation Endometriosis UK, and so when I first started learning about these conditions, the forums were, um a great place to share and find out more and learn about other people's experiences. And so I would say, perhaps go into a forum like the endometriosis uk one. Um, I think there's an organization, if I'm not mistaken, called Endometriosis Foundation and they also have a forum. So perhaps reach out to support groups who you could go and just share, because I remember when I had the first surgery, that was eight hours.

Speaker 2:

The second one was that kind of long as well, but that very first endometriosis surgery, um, I went onto a forum and posted and said you know, I've had the surgery, this is what happened. I'm just feeling a bit shell-shocked, and what was encouraging actually at that time was just the women who responded and said you know, this is normal, it's normal. You feel this way because I just think there was a mix of emotions I didn't know how to process what I was experiencing, um, and and just those encouraging words from women on the forum who didn't know me yeah but they could understand the journey I'd been on.

Speaker 2:

That, um, that was supportive. So going to some kind of support network like a forum, because as much as your friends and family want to support you, if they haven't experienced that themselves that can there's not much they can really do yeah so going to some sort of forum can be helpful, just sharing.

Speaker 2:

Don't try to carry it yourself. I think as well you know. Do share with people you trust and feel, love you. So if it's family members, if it's friends, if it's a partner you know, and try and get them to understand too. I think, like with my, my partner I'm with now, um, some appointments he's come to with me and I've wanted him to so he can hear and just understand the medical knowledge and what's going on, and he then can know how to support me.

Speaker 2:

And so, I think, allow sometimes, as women, I think we try to carry too much ourselves and so allow people in to support you, whether they come to an appointment with you just to be there, because sometimes it's so lonely going to these investigations yourself and sitting in the waiting area. So if someone can come and join you, um, and just hold your hand, you know that can be really um helpful as well. Maybe positive, it doesn't. I mean, I use scripture, obviously because I'm a Christian, so I go to the bible and use scripture. But whatever kind of positive quotes, you know things that you can find that I'd save a lot of things in my phone these days and I'd go and have a look in my notes. My notes is filled with loads of stuff, so I go and have a look in my notes and I'd have scripture that I use to kind of give me a positive uplift. So it's trying to stay with a positive mental attitude I think is really important, because if you allow the negativity to take over, you can't stand.

Speaker 2:

Because, with something like endometriosis and the same with fibroids. We don't understand enough about the condition. We don't have treatments that are proper cures. So that is even now. I've had surgery last year. I don't know if this is going to come back again. And they say to you well, you have to wait till you get into menopause and you're not having estrogen produced and perhaps it's better. I've still got a little while, I guess, to go into menopause, so I don't know what that picture looks like. So for me it's to go and try to stay positive in terms of my thinking um.

Speaker 2:

So, however that looks like for somebody, um, try and get positivity into your life. But I would also say um, roll with your emotions, don't try and keep them in. You know if you're feeling sad and down, how you know, maybe right.

Speaker 1:

Don't, don't take it out on your loved ones yeah, and it's okay to cry as well if it's okay to cry, if you need to, to journal.

Speaker 2:

It's okay to have an off day I think, I've had to allow myself. It's okay to have off day. Sometimes we feel like we need to be okay and be together all the time and you can't.

Speaker 2:

Don't put up facades. Just roll with your emotions, try to lean into them. Journal Perhaps, be open with people and say this is how I'm feeling and it's not that somebody. And if you're that person on the other end, listening and supporting, don't feel like you need to have the cure in terms of what to give back, that's a good point people just want someone to listen to you and at the time, like there's times when I've said things and shared in my head.

Speaker 2:

It doesn't even make sense at that moment I'm still processing things and trying to understand things, so I could be saying something today and then tomorrow. Maybe I've processed it a little bit more and it might look a bit different. So for somebody then, just be that shoulder yeah just listen, maybe have some words to come back for encouragement, but don't feel like you need to provide the answer because, just the listening can be enough.

Speaker 1:

Yeah, thank you so much. There's something I wanted us to quickly touch on before we run. Of course, we're fast coming to the end. I don't know where the time goes, but it just goes fast. You're a dietician and I was just wanting to ask about natural remedies. Are there any natural remedies that help with endometriosis? I read something about ginger and turmeric and stuff like that. Are those myths or do they actually help? Is that something you could talk about?

Speaker 2:

Yeah, so the evidence base for things like that just really isn't there.

Speaker 1:

Isn't there okay.

Speaker 2:

And part of that is it's quite difficult to do nutrition studies any any way, um, but there isn't a strong evidence base for any particular um nutrient that it could make a difference in terms of curing, shrinking um endometriosis. What we do know in terms of preventative factors is that diets um that are high in things like fruits and vegetables, um, because fiber is good. Fiber helps in terms of releasing estrogen from our bodies, things like beans, pulses, lentils, um. So trying to have a quite high fiber diet is quite, but it's positive. And a low fat diet, particularly saturated fats that you might find in things like butter, coconut oils, quite high saturated fat um. So going for unsaturated fats like your olive oils, um other vegetable oils, um, having some fish remember two portions of fish a week is what's the recommendation. One of those should be oily um reducing intake of red meat um, that's not beneficial or processed meat as well. So, um, we need to do more research we need to do more research into things like nutrition and lifestyle factors.

Speaker 2:

There is some evidence that making some of these changes in terms of high, high fiber, low fat can help with symptom improvement. Um with I don't know, I mean there are. I've heard, I've listened to some doctors who say you know, some women have reported um shrinking of their endometriosis or fibroids. I'm not sure we haven't got any large-scale studies that show that, but making some positive dietary changes could certainly help to improve symptoms.

Speaker 1:

Well, thank you so much, Christina, for coming on the show and for being vulnerable. It's not that easy to share this kind of things with everyone. So thank you, I really appreciate your time. I really appreciate that. Thank you so much. Thank you. I always like to end the show on a note of hope, so any last words you want to share with people, just a note of hope, just to encourage people.

Speaker 2:

Gosh, I hope I have done. Just stay positive, stay strong, stay connected. Don't be isolated. Keep people around you, do things that you enjoy. Make sure that you take time out to do things that you enjoy. You know, make sure that you take time out to do things that you enjoy. Um, because we only have, you know, one life you know, so take time to do things that you enjoy. Live it with those around you that you care about take time to do the things that you enjoy.

Speaker 1:

Yeah we only have one life. Yeah, yeah, thank you, so so much for coming and hopefully we'll have you back on again, and because we really haven't even touched one third of what we could have talked on, so I'm sure we'll have you back again to talk about this some more. But yeah and I hope that you can do something about this. Maybe write a book, do a podcast do something about the pipeline.

Speaker 2:

Good, good, good. So watch this space good watch this space so we'll let you know.

Speaker 1:

Whatever she's doing in the future in relation to this, we'll let you know about it. Thank you so much. Thank you so much for joining me today on navigating the chapters of challenge. Your time means the world to me and I hope today's episode inspired and encouraged you. If you enjoyed this episode, don't keep it to yourself. Share it with your friends, family or anyone who could use a little hope and encouragement. You can find our podcast on Spotify, Buzzsprout, Apple Podcasts, YouTube and wherever you love listening to podcasts.

Speaker 1:

Want to support the show? It's easy Just click the support button on Buzzsprout, and any contribution, big or small, helps us keep bringing you stories and insights that matter. And don't forget to check out our latest book, Navigating the Chapters of Challenge from Trials to Triumph, available now on Amazon. It's packed with inspiration and practical wisdom to help you navigate life's storms. We'd also love to hear from you If you have a story to share, an idea or just want to say hi. Feel free to reach out. Your voice matters and, who knows, your story might just inspire our next episode. Thanks again for listening. Stay strong, stay inspired and I'll see you on the next episode.