How to get diagnosed for Poly-Cystic or E... - Endometriosis UK

Endometriosis UK
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How to get diagnosed for Poly-Cystic or Endometriosis?


Hi, my name is Avree, I am 23 and I'm looking for any info I can get about how I should go about getting diagnosed. I am currently trying to conceive and would like to know what I am up against, as I have miscarried multiple times with one FT birth. I have struggled for YEARS trying to get answers from doctors about my symptoms, however every time I am put on medications for bladder or stomach infections, I've been put on birth control to help with irregular periods and had high blood pressure threw out pregnancy, and have flesh like tissue and huge clots with my periods (after going months without a period). I have had so many ultra sounds and X-rays due to pelvic pain but with no conclusions other than having ovarian cysts. My sister was diagnosed with poly cystic ovarian syndrome, but I really feel like all my symptoms fit better with endometriosis. It's so disheartening lately I'm looking for any suggestions. Thanks for listening!

7 Replies

The problem is, that to be diagnosed you have to undergo a laparoscopy. This is a simple procedure but not always conclusive, depends on the doctor and if he knows what to look for and if it is visable. You then have scar tissue which may hinder fertility and cause adhesions and possibly pain.

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Hi, Are you in the UK? Routes to follow vary depending where you are. Check in with the 'Endo Uk' site - link at the top of this page, and talk to their advisors, read everything on their site , and especially check out the link to 'BSGE Clinics' and ask for info about being referred to one. Also read around on this site as much as possible, and read the posts on here by 'Lindle' (she has an 'Endo' site on Facebook). Sadly, Endo is one of those conditions where we each have to become our own best experts.

As ccfd9 has said, the only way to really diagnose Endo is a laparaoscopy (NB A transvaginal ultrasound can spot some types of Endo tissue, which can be the sign that a lap is necessary, but not all such tissue would be noted, so ultrasound largely just rules out other abdominal cause). A laparoscopy is a hospital operation, under anaesthetic, that looks inside the whole of the abdominal cavity. This can be done at most hospitals for diagnostic purposes, but (in the UK) if removal of the endometrial tissue is contemplated, and if your condition is severe, it may be better to wait and be treated at a 'BSGE Clinic'.

These are specialist centres, often within other hospitals, for the performance of detailed laparoscopies, for the finding of all endo tissue - wherever it is. General gynaes are not as experienced in identifying the different types of endo, or finding it in all the difficult to access areas. Nor do they have the skills to remove all types of endo - depending on where it is. The BSGE Clinics have consultants who do only this, and they also have bowel and urinary experts on hand if the endo is in tricky areas.

If you have got Endo, yours may not be serious enough to warrant a BSGE intervention, but it does seem that the next step is to learn more, to convince your GP and to maybe have an exploratory laparoscopy - but beware of giving the go-ahead for extensive removal, if not in a BSGE Clinic.

Hope this helps, take care.

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GrittyReads in reply to Hidden

I'm not an expert on this, I just know that lots of people on here - over the years - don't seem to know about BSGE Clinics. Many seem to have inappropriate treatment at hospitals where the laps and removal are done by general gynaes - with often poor identification of the endo and/or inadequate removal, which can cause the endo to recur quickly, or cause adhesions that eventually make the pain worse.

I think you need to talk to the advisors at 'Endo UK' to find out about your chances of being referred - you may need to know the referral protocol and be able to quote it at the GP ...

There is a strict protocol which exists regarding the referral of women with Endo to the BSGE Clinics. According to what I've read on here, particularly the posts by 'Lindle' (look back through the posts on here to search and find them , plus she now has an Endo Page on Facebook) it seems that GPs (and general gynaecologists who are not Endo Specialists) should know this, and should stick to it. It may be that someone has to be really bad before they are referred, but I don't know the detail. Check out 'Lindle' but also talk to 'Endo Uk' and ask them.

Good luck!

If you can afford private healthcare then please do it. I suffered with the worst pain since the age of 18 and was told all sorts but was only diagnosed 3 years ago when I went private. As soon as the gynaecologist saw me he said he new I had endo even before my lap operation, the lap confirmed it. I have endo tissue latched on to other organs and also had cysts in my ovaries which were removed.

I thought a lap was just the process of looking inside the abdominal cavity - for which anaesthetic is needed. The lap does not have to involve the removal of any endo that is found - and that should be discussed with the patient beforehand, and should not be done if it is apparent that the patient's Endo requires specialist treatment usually only found - in the Uk - in BSGE Clinics.

Laps can just be exploratory, with no actual surgical removal: my first one was, and I wasn't any worse. The endo only got much worse, years later, when endo was removed during a 2nd lap that was only partial, and not done by a BSGE Specialist.

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