advice needed on my endo journey - Endometriosis UK

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advice needed on my endo journey

choccake123 profile image
8 Replies

Hi everyone,

about a year ago, my GP told me she suspects I have endo, so I had a blood test and pelvic scan which both came back negative, but that was expected. I told the gyno I have all the symptoms but mentioned how intercourse is not painful. Sometimes I do get some pain during, but mostly after intercourse, but again, this inst a frequent thing. However, the gyno used this to say that I dont have endo. She suggested going on contraception for relief for my painful periods and other symptoms and so I did.

After a couple of months being on contraceptive pill and nexaplanon implant, I have found that when I get my period the cramps/ possible flare ups are as excruciatingly painful as they were before implant etc, along with the other symptoms of heavy periods, back aches, nausea and vomiting while im on, diarrhea. Im a student and have often found myself unable to go to uni/work, and even simply get out of my bed when my "flare ups" get really bad :( and this is a monthly occurrence and has been for a few yeras now.

This all made me doubt that I could still have endo and I spoke to a different gyno who thinks I should get a Laparscopy. My issue is that I'm really anxious that I might not have it, despite all the symptoms. I just want some advice or see if anyone is in the same boat as me x

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choccake123 profile image
choccake123

I forgot to add that I am also anaemic, potentially due to very heavy periods and I am soon to be tested for thyroid etc. I also saw a post on constipation and endo linked and im not sure how relevant this is but ive found in the last 1-2 years especially I have struggled with poo a lot and I often find myself very constipated for days! Not sure if anyone else has this link and if it is due to potential endo?

Lostintransit profile image
Lostintransit

Hi there,

The only answer really to your questions and worries is you are having all these symptoms with no explanation and if you think you might have endo, a lap is the only way to find out. No blood tests or scans will show anything.

Also not everyone with endo has all the same symptoms. I never had painful sex during in the way some women do but had cramps afterwards, just like you do and I do have endo and most likely adeno.

As for your other issue regarding your bowels. Endo is found on the bowels a lot and can be causing these issues. It’s very much linked.

Right now I will do anything not to pass my bowels due to the pain. I’ll go without eating which I know is stupid but that’s how bad the pain is. But until I’m seen properly by an endo specialist I won’t know. I also have coeliacs disease and possibly crohns so this leaves lots of other variables to just endo causing my bowel problems.

I think the fact that you saw a second gynae who thinks you need a lap, I think that’s your answer. It’s a very simple procedure to diagnose. I think unless your pain goes, what other option do you have than to find out?

I hope you find the answers you’re looking for. But the sooner you find out the better too. Good luck with everything x

choccake123 profile image
choccake123 in reply to Lostintransit

True you’re so right! I didn’t actually completely understand endo til recently so I see why it makes sense for not everyone to have painful sex with endo.

I think I’m just worried they won’t find anything but it’s the only way I can get an explanation for how I’ve been feeling.

Hope everthing gets sorted for u! Thanks for the advice x

Hi ChocCake,If your gynae suggests a laparoscopy, it's because they think it's worthwhile. They wouldn't offer it otherwise.

For the endo symptom list - having a few on this list is enough to follow up on it. Women with endo *sometimes* have all of the symptoms, but not all women do. I have endo, and I don't have all of the symptoms.

I decided to go ahead and have the laparoscopy because I was in too much pain from endo. Now that I have a diagnosis, I can actively make a plan to get a handle on the pain. Through a set of approaches, my pain has come down from a full 10/10, down to today's 4/10. There are more things I can do, do will keep reducing it as I can. So, it was worthwhile for me to do the lap.

choccake123 profile image
choccake123 in reply to

Yeah true that makes sense. Did you feel worried they wouldn’t find anything too?

I’m having an internal examination done by my gyno too, not sure if that will do much.

It’s just slightly shocking I got turned away by the first gyno because I said I didn’t have painful sex.

choccake123 profile image
choccake123 in reply to choccake123

Also, I’m so glad your pain levels have gone down now!!

in reply to choccake123

Hi ChocCake,I actually ended up having a diagnostic lap a few months after I had a lap to look for appendicitis. The first time, it wasn't appendicitis, it was a ruptured endometrioma. So, I was feeling pretty certain I had endometriosis before the diagnostic lap. At the time, I'd hoped they would be able to treat it, but it turned out my case was too complicated for that session (to be continued later).

I think the reason I wasn't too afraid of having the lap was that I've had general anesthetic before, so I knew the lap wouldn't hurt me (I would be asleep during the procedure). I knew it would take some time to heal after, but it would likely help to win a better quality of life in the long term with less pain.

I guess I go for delayed gratification. 😉 A few weeks healing traded for lower pain sounded like good odds to me.

Purpledots55 profile image
Purpledots55

I am currently going through the same thing. I have been continuously bleeding from may 2019. I have pushed for scans, bloody tests which have all came back okay. Until my own research, endo hasn’t been brought up, through looking, my symptoms are correlating with what i have researched and seen other women state. So you are not alone. I am about to speak again to the doctors and ask about further tests for endo!

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