Advice needed. Possible endo?

[Hjs23]

Hi everyone, I just wanted to see if I could get some advice from those of you with diagnosed endo.

I’m 23 and have been experiencing stomach issues for as long as I can remember now. I’ve always had mild pain on the lower left side of my stomach, I’m now prone to water infections that then travel up to my kidney so at first they thought this was what was causing my discomfort, I ended up in hospital about 4 years ago because the pain was getting worse and it wasn’t improving after being on multiple antibiotics treating me for a kidney infection. Long story short they did an ultrasound, bloods and endoscopy that all came back normal. I was booked in for a CT scan but it didn’t end up happening.

I then went private and was referred to a gastro specialist. He said he suspected coeliac disease and diary intolerance. After being on a coeliac and dairy free diet for 6 months and my symptoms not improving (symptoms of extreme bloating, nausea and stomach cramps/pain) he tested me for coeliac and shock, it came back negative. He then said he was going to redo the endoscopy and do a colonoscopy. Colonoscopy results showed my bowel was inflamed so they took biopsy’s. Endoscopy came back normal and so did bowel biopsy’s. Was then told I had severe IBS.

My symptoms became worse over time, I would get extreme diarrhoea, cramps, nausea and pain mostly on the lower left side of my stomach with cramps that would shoot deep between both my hips. This happened a few times after sex but not all the time. I ended up at the doctors a couple of times because the pain was so bad and the diarrhoea was so bad I would be unable to go to work. They said on multiple occasions, we think you have food poisoning or gastroenteritis, they took stool samples that then came back negative of both.

Again, symptoms are getting worse to the point where this time last year my pain started getting so severe that it takes my breath away, it almost comes in waves, I’m unable to move or do anything that will ease the pain, I get severe violent diarrhoea that is extremely painful, severe pain deep between my hips and deep in my lower left stomach and hip, this usually lasts between 1.5 - 3 hours. It then eases, I become completely exhausted and the left side of my stomach swells/bloats.

One doctor mentioned endometriosis to me a couple of years back but said he thought it was unlikely because my periods are fairly normal (I’m on the pill, I would say they are heavy and I get pains but I wouldn’t say they are severe) and at the time I completely dismissed endometriosis because I didn’t know enough about it.

Well I’ve been trying to monitor how often I get these episodes of severe pain and it’s usually every 4-6 weeks. During my period it can be extremely painful to go to the toilet and I get a lot of gas that again is very painful to pass. I spoke with a doctor about a week ago (it was an informal conversation) and he said 100% not IBS and he’s thinking possible endometriosis but he’s a gastro specialist and has suggested I go for an endoscopy and colonoscopy to rule anything out in those areas. I’ve been doing so much research but I just wanted to see if anyone has had similar symptoms or a similar experience? I would really appreciate any advice. Thank you in advance!

P.s. I’m so sorry this is so long..

[stephersb]

Very similar story to me. I would 100% feel you need to be referred to a gynecologist as they will be able to explore the endometriosis route properly. I either have endometriosis or a infection and inflammation of the pelvis - waiting on my results from my Laposcopy last week.

[Hjs23 in reply to stephersb]

Thank you for your reply! After reading so many similar stories I definitely think I’m going to push to get referred to a gynaecologist and get checked. There is so many people that have been told they just have severe IBS when it’s actually endo? It baffles me. Good luck with your results🤞🏼X

[stephersb in reply to Hjs23]

I went down the route of IBS before I considered surgery- Low Fodmap diet, medication etc but found no reaction - its been a tough year with it all.

Endometriosis is where tissue usually found inside the womb is found outside. I can cause many symptons such has painful periods, heavy and or irregular period's, pain during or after sex, pelvic pain, IBS symptons such has stomach cramps, diarrhoea, constipation and urgency to go. It affects 1 in 10 women but not all women have symptons. Some people with severe endo have no symptons and some with mild endo can have severe symptons. It can be found in your pelvis, on your organs and in some cases can cause your organs to stick together as well as being found on the lungs. Like potentially in my case with the endo / infection (whatever it'll be), it was found in the pelvis but not on my bladder or bowel but still caused awful IBS symptons which was uncontrollable even with medication and following the low fodmap diet. Never understood why. In some severe cases it can affect fertility.

[XsarahXx]

I’m sorry your going through this. I definitely think you need to be referred to a gynaecologist, whilst your symptoms might be more gastro related everyone is different and the pain in the hips and lower part of the abdomen sound more like endometriosis to me. I was diagnosed back in January and I have never had any problems with my periods either, it took 18months for a diagnosis, and I had the same pain your describing especially after or during sex but also not every time, plus IBS is closely linked to Endometriosis. The doctors also kept palming me off with that when I don’t have that at all, but the symptoms again can be similar. It also depends where the Endometriosis is, I also had constant water infections and I now know this was due to Endo on my bladder nothing to do with my kidneys. After an internal scan they found my ovaries were stuck which led to me having an MRI and then later a Laproscopy. You know your body and when something isn’t right, I really think you need to try and see a gynaecologist because it sounds so similar. It’s exhausting but keep pushing, no one even mentioned Endo to me for over a year and I got to the point I thought I was going crazy but they do get it wrong. Hope this helps somewhat. Good luck 😘 I know how hard it is but keep going! Xx

[Hjs23 in reply to XsarahXx]

Thank you so much for your reply! I really appreciate it. I had another flare up on Wednesday and I’m still so uncomfortable now, I almost feel like I’m convincing myself nothing is wrong (when clearly that’s not the case) because I’m just fed up of chasing the doctors about it. I keep getting referred to gastro specialist when I’m almost 99% sure this is gynae related and I know you shouldn’t look online but I’ve done so much research and I’m just convinced this could be endo! Hope your doing well xx