Here is my endo story (maybe grab a brew)……It’s a bit of a rollercoaster.
I started with symptoms of endometriosis in my late teens (as far as I can remember), of course I didn’t know what the cause was then (but had that lightbulb moment a few years back following my diagnosis)! The symptoms I remember initially were irregular bowel movements, occasional pain with bowel movements and a really random consistency to my stools. One day I would have diarrhoea, the next I would be constipated, I accepted this as ‘just the way my bowels were’, it was more of an inconvenience at that point. I was young, unaware of what was ‘normal’ and happy to go on ignoring it.
As the years went by, a few more symptoms popped up, the most noticeable one being pain at certain times of the month but mainly when I sat down! This pain can only be described as ‘being stabbed up the bum with a knife’ (not ideal when us humans spend so much time sitting). That pain, like many of the others, would be short lived and was easy enough to ignore or avoid. Around this time, I also got a little bit of spotting between my periods (I was about 21 at this point and going through a lot of exams at university). I put the bleeding down to stress but decided to see a gynae specialist just to be sure. The Gynaecologist carried out the usual tests and told me everything was A-Okay.
With my mind at ease, I let some more time pass but started to worry that my bowel issues were maybe more than just stress, as they seemed to follow a vague pattern (the pattern being something to do with my monthly cycle). I went back to my GP and they referred me to a gastroenterologist. I was glad that someone was taking my concerns seriously and doing all of the necessary tests. I had a sigmoidoscopy, a colonoscopy and a barium x-ray over the course of a few months. Unfortunately, each time, the same result came back: ‘nothing to report’. I was eventually sent away with a diagnosis of IBS and told to ‘watch what I eat and exercise regularly’. I wasn’t happy with this as a ‘diagnosis’ at all, in fact it made me quite angry. I always ate a healthy diet, I had been vegetarian since I was 10-years-old and I was extremely active, doing some form of sport 4-5 days a week.
Things got better before they got worse….
I was lucky enough to become pregnant in the winter of 2015 and had a beautiful baby boy the following autumn. This pregnancy was what you would describe as ‘textbook’. I had a water birth as planned and recovered really quickly with no issues. Sadly, that’s where my ‘textbook’ life ended.
I was over the moon to find out that I was pregnant again in the summer of 2017. Nine weeks after my positive test I started getting some spotting. I had a scan and all was ok, I saw a healthy heartbeat and breathed a big sigh of relief. A few weeks went by and the spotting continued, I had more scans and each time I saw a healthy heartbeat and a perfect, wriggly baby. A familiar pattern was taking shape though, I knew something was wrong but I kept being told that everything was fine. Sadly, at 16 weeks the bleeding got much worse and I went into labour giving birth to my second baby, but this time I was unable to bring her home.
After the birth I had terrible pain, mainly bowel related but also had a lot of intermittent bleeding between periods. I was worried that there was something structurally wrong so went for more tests to try to find some peace of mind. Yet again, I was told that everything was fine and it was just ‘one of those things’. I tried to carry on as normal, I pushed what happened to the back of my mind, went back to work and made plans for the future. My husband and I didn’t want what happened, to stop us trying for another baby. Unfortunately, I suffered another two miscarriages the following year, one at 11 weeks and one at just 5 weeks. Each miscarriage left me with months of quite severe pain. The pain affected my bowel region mainly but again, I put it down to stress and my bodies way of healing after the trauma of the miscarriages, but I couldn’t help thinking that it wasn’t ‘normal’.
Tests, tests and more tests….
As I had now successfully met the NHS ‘criteria’ for further investigation into my losses (3 losses is the golden ticket), I was sent for blood tests, hormone tests, scans etc……you name it, they did it and I got the same answers again and again ‘we can’t find any issues or reasons behind your losses, there is no reason why you can’t go on to have other healthy pregnancies’. By this time, I felt broken, I hadn’t filled that huge hole which the babies that didn’t survive had left and I thought I never would!
Years went by and I kept dreaming of having another baby but we didn’t manage to get pregnant again. I was also met with more bad news when I was told that because I already had a child, I wasn’t entitled to any IVF treatment. I felt completely lost, my son was 4 at this point and we were best friends (we still are). Looking back, I think that everything that I (we) went through brought us closer together, I just didn’t realise at the time. I desperately wanted a sibling for him but felt like time and options were running out.
The turning point….
In September 2019 I had a pain in my left shoulder and arm which seemed to be associated with my period starting, I had experienced this a few times in the past (mainly when exercising), it felt like a severe, constant stitch (enough to stop me in my tracks). Annoyingly, this time, the pain didn’t settle like it had in previous times, so I called my GP, feeling a little worried. The GP asked me to go in for a face-to-face appointment so that they could check me over. I explained that we were trying for a baby and that my period had started a little later than usual (which was unusual for me). The GP wanted to get me checked over thoroughly (she was worried about ectopic pregnancy / internal bleeding), so she sent me to see a gynaecologist consultant at my local hospital that same day. The consultant chatted to me for a few minutes, reassured me that there was nothing to worry about and told me that my symptoms were likely due to ‘a backwash of blood during my period, which can irritate the pelvic region and surrounding organs’ (retrograde menstruation). He said that the symptoms would settle and to go home and rest.
I got home that evening and initially felt relief that there was nothing seriously wrong with me, but then started thinking about this ‘backwash of blood’ that the consultant had mentioned. I thought it was an odd thing to say to someone without following it up in some way! Surely something like that needed addressing? Was it normal? Did it happen to everyone? Should it cause pain? Will it keep happening? Will I have to stop exercising? Am I doing too much?…… The questions kept coming, so much so, I couldn’t sleep that night. So, I did what any sleep deprived adult would do…..I consulted Dr. Google. Sure enough, top of the list for symptoms associated with this, was Endometriosis. I read more about the condition and thought that most of my symptoms fitted the description.
After 10 years of seeing ‘experts’, I had finally found something that could explain my symptoms from good old Google. I wanted to check my theory with someone who knew what they were talking about, so booked in to see an endometriosis specialist consultant.
A diagnosis in 10 minutes, after waiting 10 years….
The day of my appointment came and I was extremely nervous, more than I had been for any of my other appointments. I’m not sure why, I think it was the anticipation of finally getting an answer, or maybe it was the worry of getting it completely wrong? I don’t know, but I wanted to get it over and done with quickly. I sat in the consulting room with the consultant and reeled off my list of symptoms. I tried so hard not to cry but the tears just kept coming. I wanted to make sure that I explained everything clearly, but I found it so hard to speak. I had spent years not talking about the babies that I lost (it was too painful) and now I was having to bare all to a complete stranger, it was so much harder than I ever anticipated. I explained that pain was a small factor in my life but that the main issue was the infertility and the heartache that was causing.
The consultant listened and gave me time to gather my thoughts, he chatted to me for a while then carried out an internal examination and within less than 10 minutes I had my diagnosis. Of course he told me that the only way to be 100% sure would be to carry out a laparoscopy, so that was scheduled for the following month. In October 2019, it was confirmed via laparoscopic surgery, that I had endometriosis. My consultant advised that I should have the endometrial tissue removed as soon as possible, due to the extent of the cell growth, so we booked the operation in, for 3 months time.
The news I had longed for…..
In January 2020, 2 months before the National Lockdown, I had my operation and my endometriosis was removed (as much as possible anyway), I came round from my anaesthetic and once the sickness wore off, I had a feeling of complete relief. This ‘thing’ that had been haunting me for 10+ years was real and being dealt with. I was aware that it wouldn’t be the end of it but there was a clear reason behind my symptoms and this gave me fresh hope!
I recovered really quickly from my operation and was back exercising after 6 weeks. I now had a new mindset and wanted to put everything into ‘healing’ my body and give myself the best chance at growing my family. I changed my diet by going gluten-free (there is a link in my family to coeliac disease and with a history of miscarriages, I wanted to give it a try), I upped my multivitamin intake and started taking daily turmeric supplements (read the research on these here). It felt extreme to be changing things so drastically but to me it was worth it and it gave me a focus.
In July 2020, I got the news that I had longed for……I was pregnant again! I won’t lie, I was terrified! It was a really stressful pregnancy from start to finish. I had intermittent bleeding for the first 20 weeks but each scan showed a healthy heartbeat, not a day went by that I didn’t think I was going to lose that baby…….. But in April 2021, I gave birth to my amazing baby boy and he was just perfect!!
There is hope!
I will never forget the babies that I lost. I spent weeks, months in fact, wondering what I had done to cause those losses, but my diagnosis changed everything. The day that I saw that consultant and he confirmed my suspicions, was the day that I stopped blaming myself. I was so relieved to get my endometriosis diagnosis, without it I wouldn’t have my amazing baby boy, I can say that with some certainty now. I know that not all stories have a happy ending but I wanted to tell mine, in the hope that it would help someone else find their diagnosis and maybe lead to their rainbow baby.