Could it be endometriosis?: Hello all! I’m... - Endometriosis UK

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Could it be endometriosis?

georg23 profile image
10 Replies

Hello all! I’m not entirely sure if this is the right place to be, but it’s worth a go. So for about a year/a year and a half now, I have been getting all kinds of weird symptoms/changes in my body. I have previously been diagnosed with an overactive thyroid from the age of 14, until I was discharged from the hospital around the age of 19. I’m now 21. When these recent symptoms began, at first I thought maybe it’s still to do with my thyroid, however I’d never really had anything like it before, so I ruled it out straight away. I think it all started with water infections which would happen fairly regularly, and then I started getting pain during sex, but nothing to do with deep penetration. It’s hard to describe it but it’s almost as if the whole of my walls are bruised and so when being penetrated, it’s putting pressure on the ‘bruising’ and causes discomfort - but not to the point where I can’t take it, it’s just not a nice feeling obviously. I was unsure what it could be and I would say to myself maybe deep penetration has caused some bruising... I'm sure it’ll go. But as a few months went by, it was still the same, and even just the initial penetration I would be uncomfortable. I’ve always had heavy periods, but for a few months in a row, I would get severe pain on the first day of my periods to the point where I wouldn’t really know what to do with myself. I’d have a burning sensation across the whole of my pelvic area, have diarrhoea, and then sometimes I’d throw up as well. When I first went to the doctors, my GP had me take a smear and other tests for pregnancy and STI’s etc. All of which came back negative and everything was fine apart from she found a patch of skin that looked abnormal. So I went to the colposcopy clinic and had further tests and scans done, again, all of which were absolutely fine and the gynaecologist told me ‘it’s normal to have heavy periods and I’m young so my body will be changing constantly and some people are just unfortunate enough to have severe pain but they live with it’ and the abnormal patch of skin seemed to be skimmed over - assuming it was normal. So after all of this I left it for another few months, thinking ‘the results say I’m fine so I must be over thinking it, or I just need to live with it like he said’. But then lots of small things popped up like sharp pelvic pains throughout the month, clotting in my periods, period pains when I wasn’t on my period, bleeding or watery brown discharge after sex, etc. And then I had a really bad episode on the first day of another period where I had a fever and severe pelvic pain, again to the point where I’m clueless on how to help myself. So I rang my doctor for some advice and he booked me in for an urgent appointment the following day. I explained all of my symptoms to a different GP and she said within 3 minutes of being in the room ‘I don’t really think they should have sent you for a colposcopy, I’ll refer you to a gynaecologist’. So I was bloody clueless at this point, thinking has the previous GP got it slightly wrong? So when I went to see the gynaecologist a few weeks back, I had another smear done and after finding nothing, yet again, and talking about all of my symptoms, he was left speechless/clueless and genuinely didn’t know what to say to me. He looked at his notes and I could tell how hard he was thinking, but nothing! Then he started asking me about my bowels, which I told him they weren’t perfect because they’re not, but they aren’t bad either. He said the only way I can find out if I have anything wrong with my is if I have keyhole surgery, but he said he felt really strongly that they wouldn’t find anything and he doesn’t want to put me through the surgery for nothing. He then suggested ‘if you’re having trouble with your bowels then maybe we should put you on some tablets for IBS for 4 months and then come back and see if anything has changed. But I felt really frustrated and kind of embarrassed that I had just told him all of this stuff about pelvic burning sensations, and pain during sex, and heavy periods and severe pain etc etc and he comes out with ‘maybe it’s IBS’?! And so I’m currently debating what to do as I haven’t been to pick up my prescription because I’m not keen on the idea of taking medication for something that I don’t really feel needs treating.

I’m sorry that this is so long winded but I’m hoping that the more detail I give, the more chance I have of someone being able to relate? Does anyone have any kind of idea what this could be, or if it is worth asking for the treatment? I’m just worried that the result will be that they cannot find anything and that I’m left feeling stupid and embarrassed as if I’ve made everything up, but most importantly that none of my symptoms will go away!

Thank you if you’ve read this far.

G

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Tinkmin profile image
Tinkmin

Morning Georg23

It’s like you have described how I was in the beginning. My GP was the same. The only way I got any answers and treatment started was by googling the endometriosis specialist in my area. I then paid £140 consultation fee ad went to see him privately. He told me after an examination what was going on,he then added me to his NHS list and got me started on my treatment straight away. I now see his TEAM at hospital unfortunately The only time I seen him was when I paid. The point is am now on the right road of treatment they just can’t decide what to do next.

I hope this helps don’t give up keep pushing to see someone that can help you. It’s extremely hard to be diagnosed.

Good luck

georg23 profile image
georg23 in reply to Tinkmin

I’m so glad I’m not the only one! And oh my, £140 is a lot considering you wouldn’t know for sure if they would help you! I’m glad you’re getting somewhere with it all now, I hope they come to a decision.

Thank you for your help and good luck also!

G

KNJR4 profile image
KNJR4

Don’t be sorry for wanting answers! I agree with Tinkmin, somehow get yourself to a gynecology consultant, preferably one who specializes in endometriosis. My case went misdiagnosed for 12 years... was told I had everything from cysts, fibroids, kidney stones, IBS, Crohns, Celiac... suffered with that burning, stabbing abdominal pain, IBS symptoms, pain during sex... I’ve even had (three) female gynecologists dismiss my pains- make sure you see an endo specialist, not just a gynae. They’ll listen to you, and even if it ends up not endo, they’ll have more expertise to help you find some explanations. Be aware that if it is in fact endo, you may not find pain relief, but at least you’ll know what’s going on.

georg23 profile image
georg23 in reply to KNJR4

I haven’t yet found anyone else with the burning pain. Every time I search for it, nothing comes up at all! I feel so much better knowing that others are having the same problems with being turned away. I worry that the doctors think I’m being a hypercondriac because they always pull that sympathetic face as if to say ‘the tests have all come back fine...’ which to be fair, they have, so they can only assume I’m either making it up or they just don’t know how to help me. It sounds dramatic but I get upset and tired of feeling guilty about dealing with it all on my own, and being turned away every time I seek help. I was beginning to think I should give up, but after seeing this page and reading about all the people who have gone through the same thing but have finally been diagnosed, it makes me want to try again.

Thank you so much for your comment and advice. I hope everything is well.

G

KNJR4 profile image
KNJR4 in reply to georg23

Hiya!! You’re welcome! I know what you mean- they start to treat you like you’re crazy. You know your body better than anyone else!! The burning/stabbing is indescribable... on the lower

right it sometimes feels like a barbed corkscrew is twisting into my side! The IBS type symptoms are difficult to manage. I had my diagnosis via laparoscopy in 2015, with conservative removal. Had my second laparoscopy only last week, endo on bowel was identified but not removed since a bowel surgeon wasn’t present. message me anytime!!

georg23 profile image
georg23 in reply to KNJR4

I’ll message you now!

Slk959 profile image
Slk959

Doctor enjoy fobbing off with IBS. Your symptoms are so similar to my endo 1st time round it was agonising to have intercourse I would have hot and cold sweats are vomit. Had to spot intercourses as I felt I was being stabbed! Request/Demand a laparoscopy!

georg23 profile image
georg23 in reply to Slk959

I felt rude not going with the gynaecologist’s advice because it’s his job, but it just didn’t feel right at all! thank you for the advice :)

babybearsmummy profile image
babybearsmummy

I can’t really help or advice you as I’m going through tests just now to find out what is wrong with. I’m being sent for a scan and all my other tests like you can back clear. Honestly if I had the option for going and getting keyhole to give a definite yes or no answer I would go for it. Surgery isn’t nice but it’s better than waiting about and being passed about doctor to doctor with “it could be this, it could be that”

georg23 profile image
georg23 in reply to babybearsmummy

I think I might ask my doctor to go through with it, because I’m worried if I leave it any longer then things will just get worse. A lot of people seem to be waiting around for answers so I think having the surgery would be the best option. Thank you very much for your comment, I hope everything goes well with your other tests and that you find the answers you need!

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