Hormones or endo

[SlB94]

Hi everyone,

I get really bad fatigue, dizziness, light headed, feel sick most of the time.

My consultant told me they are not symptoms of endo that are hormone related and probably the combined pill I am on. I find that hard to believe as I have been on it for nearly 8 years and never had any of these symptoms until last year. She said may have to try alternatives of the injection, coil etc.

She has booked me in for a lap as I get bad stomach pain and bowed movements. She said it’s 50/50 endo or ibs. As I’m not bleeding when going to the toilet I can’t have endo on my bowel (is this true?)

I don’t want to risk the complications of having the lap and turns out to be ibs and need to change the pill.

Anyone else been in a similar situation?

[Kirst625]

Hi, you're going through it poor lovely aren't you. Prior to diagnosis 3 weeks ago via laparoscopy I was told by a gynae that my symptoms were definitely IBS in his opinion so k had a bit of a fight with the system and ended up going private with a specialist. I had it on my right and left pelvic walls, right and left ureters, in my Pouch of Douglas and some on my bowel. I was getting some bleeding from my bum on period but it took me a while to suss this as I just thought it was from my period and filtering round. Endo can cause bowel symptoms without being on the bowel itself too by the sounds of it. And with regards to the fatigue etc they are symptoms I also suffer and seems quite common to have a raft of other symptoms with it. In fact fatigue is documented to be part of the symptoms. Really important that you get seen and treated by the right level of expertise, particularly for the lap as I've read a lot about women being operated on by general gynaes that don't have the expertise to look everywhere properly or recognise it in its many forms and so get told they haven't got it, when in fact it later turns out they have. The NICE guidelines say that at the least you should be seen by a gynae with a special interest in Endo but with possible bowel involvement you may also qualify for referral through to a BSGE specialist centre. Having been discharged by the top consultant in a general gynae ward -who said he had extensive experience in endo - because I had a clear transvaginal scan (incorrect practice!) I have lack of faith in those that aren't specialists. I would really recommend you take some time to do some more research and ensure you are getting the right level of treatment - because of the bowel symptoms I would recommend exploring whether this should be at a BSGE centre. Have you had an MRI to see if it can be seen on that (it doesn't always if not infiltrating)?

[SlB94 in reply to Kirst625]

Thank you for your response. I feel I get better answers on here than actually from the consultants!

My gynae referred me to a bowel specialist as she wanted to rule out IBS. He sent me for bloods and an MRI scan. I am yet to get the results from the MRI and see the bowel specialist again but I have since seen the gynae again who didn't view the images of the MRI just briefly read the report which I saw said it was basically all clear but I don't know if they actually looked and checked for endo and just saying clear for Chrons etc. Did you have an MRI?

I will look into the BSGE centre thank you.

[Kirst625 in reply to SlB94]

Hi, apologies for the delay in responding properly, I had a call from my surgery about another health matter (just being greedy now aren't I 🙈) that took my focus for a few days. I did have an MRI prior to op to check that if there was Endo present it wasn't deep or infiltrating. It was clear which was good in knowing that it hadn't infiltrated the bowel wall and so I didn't need a bowel surgeon present at the same time. It left me feeling obviously relieved but also still slightly hesitant about whether they would actually find anything - but they very much did. From reading lots it seems it's really important that the professionals conducting and reading scans have the right level of expertise so that things aren't missed. But the fact that the MRI came back clear doesn't mean to say that it's not Endo causing the symptoms. Good luck with getting on the right diagnosis pathway and keep us posted x

[SlB94 in reply to Kirst625]

Don’t worry!! Hope everything is ok!

Yes I am going to try see someone else maybe privately.

Thank you for your help! X

[Stk19]

Hi! How is it going?? My Dr's told me that my symptoms regarding urinary pain and bowel issues (excruciating pain when going , mixed diarrhoea & constipation). I had other more gynae like symptoms and even my surgeon told me he didn't think he'd find any endo. My thoughts where correct as I had my lap and the endo was on my bladder and peritoneum, which explains both! I didn't have an MRI, only ultrasounds which confirmed a 7cm cyst in my right ovary. I work in the NHS and through quizzing Dr's I was told that endometriosis is actually really difficult to see on scans so I really don't know why they do them?