Getting diagnosed after bowel problems next steps

[DecafIsNotTheSame]

Hi everyone,

I’m new to this but hoping someone may be able to help as I have no idea what to expect.

I’ve been for a sigmoidoscopy today which was awful. I was screaming from the pain which I didn’t expect. luckily I had a supportive team (judging by other people’s experiences not always the case). They found nothing and also as expected, suspect endometriosis.

I’m being ‘urgently referred’ (not sure if it makes a difference or not) to a gynaecologist.

Was anyone else diagnosed through bowel problems?

I’ve always had severe pains and heavy bleeding irregular cycle etc, pretty much all the classic symptoms.

I’ve recently got married and we were going to start trying for a baby in July so this will most likely impact what treatment I could have?

I guess I’d just like to know what the next steps may be?

Thank you for any help

[Amy-Marie]

Hi, yes my main symptoms are bowel related! Look up 'bowel' or 'deep' endometriosis. I had lap 10 days ago and endo was found in my pouch of douglas. I have regular periods but severe ovulation & period pains and pain with intercourse. I went private in the end as waiting list on NHS for gynae was too long after 4 years of being incorrectly diagnosed with IBS and seeing a gastroenterologist for numerous other tests which were painful and all negative. I wish you luck! X

[DecafIsNotTheSame in reply to Amy-Marie]

Hi, thanks for replying! Thanks that gives me a bit more to look into. I’ve been “urgently” referred (whatever that may mean) so hopefully it may be fast?? Sorry to hear you had to wait so long, I can’t imagine 4 years of this pain. Hope your recovery from your laparoscopy is going well

[Koryu]

Hey there. I am so sorry you had to go through the pain. I am glad they are referring you on, I am sure you'd rather have answers sooner than later.

In my case when they checked my rectum they found that the endo had penetrated it (they could see it) so I needed surgery to remove a part of it. It is possible some endo might sit on top of the colon and they can shave it off etc. So, it doesn't have to be anywhere near as much as what I had and I had excellent surgeons, so it was still 'just' a laparoscopy (before you panic at the thought). I also don't have any terrible after effects and instead am doing much, much better. Plus, they won't know it is endo until they check.

It might not be anywhere near your colon either, but something might press on it getting it inflamed or similar. Bodies, eh?

In terms of endo impact on trying: You can conceive with endo if all the necessary parts are doing their job. They will possibly check this is the case, and if so you might have a lap and they can remove some endo tissue as part of that, which would reduce your other symptoms a lot. All depends what is planned and agreed for the day. But one step at a time.

Endo can affect all kinds and it is frustrating. It feels so much out of our control, but see what works for you. If you don't feel listened to at any point get another opinion.

I wish you all the very best for trying for a child. I am doing the same. ^_^

If you have any questions let me know. I wasn't sure how to write this post so hope I haven't included anything which might make you feel uneasy, it isn't my intent. You are getting help, the first hurdle is cleared.

[DecafIsNotTheSame in reply to Koryu]

Thank you for your reply! That was one upside of the sigmoidoscopy, to be sure that it hadn’t penetrated my bowel. I’m actually really relieved that I’ve been referred, just hoping the wait isn’t too long as the bowel issues are affecting my life massively at this point.

Thank you for your response, I really just want to know what to expect so this is helpful. good luck to you too

[Natspooch]

I've been having bowel issues since September and my doctor has reffered me to gynacologist my appointment is 30th of April but I've waited months for it I'm always constipated hardly ever go to the loo like I used to anymore what have your symptoms been?x

[DecafIsNotTheSame in reply to Natspooch]

Thanks for responding I am the opposite to you, sometimes 6 times before work alone! Blood in my stool etc and pulling pains. I’m just exhausted. I hope your gynaecologist appointment goes well, do you have an endometriosis diagnosis yet?

[Natspooch in reply to DecafIsNotTheSame]

No diagnosis as yet but I get the pulling pains too around my hips even when urinating some times also get sharp rectal pains when ovulating and during my period to the point I can't sit normal some times and some days I can go to the loo and it's like you loads all in one day but not diarrhoea it's mad it's like my body's just gone crazy x

[StefaniaJW]

Your next step is consulting with an experienced endo excision surgeon ASAP. Period.

If you get referred, make sure you get referred to a serious experienced excision surgeon. Great gynaecologists that are not specialised or ablation surgeons ARE NOT GOOD ENOUGH. It is CRUCIAL you listen to my words and do a lot of research on your own to pick the best in your area otherwise you might end-up with an inconclusive surgery and will have to undergo more.

If you have had years of pain, irregular cycles and heavy bleeding, getting pregnant without undergoing a laparoscopy will be close to impossible (chances depend on the stage of endometriosis you're at).

Do not let doctors talk you into IVF unless the HSG comes back saying your tubes are blocked or unless you're told they are after an excision surgery.

(I'm assuming you will undergo surgery because of the intense pain you've been in for a long time, but doctors might suggest you take Visanne or other progesterone-only drugs for a year or so to reduce cysts or similar. Your excision surgeon will know what to suggest depending on your case).

[DecafIsNotTheSame in reply to StefaniaJW]

Thank you for your reply, that’s really helpful. I’m definitely going to push for someone specialising in endometriosis and I’m prepared to go through private if necessary.

Do you have any advice on how I might find out about the surgeons in my area?

[StefaniaJW in reply to DecafIsNotTheSame]

Contact me privately