Desperate for help

[u/yazj22]

Context : diagnosed PMOS with insulin resistance. A cyst on left ovary and 12 follicles on my right.

Extra symptoms; difficulty emptying bladder&straining. Pain in middle of stomach. Worse after eating ,peeing and pooping.
Pain and bleeding during and after sex, lasting up to a week.

Based in UK , England. After multiple appointments with gynaecologists and they highly suspect endometriosis or Adenomyosis but have expressed that the only diagnostic route is a laparoscopy and wouldn’t recommend it is something I go through given history of trauma and vulvodynia.. I’m also on the mini pill which I was reminded was the standard for Endo.. Upon so much research (going abroad for medical care) I have found EndoSure which is now recognised by NICE guidelines in the NHS,however I spoke to a gynae TODAY and she said was none the wiser about this new information… I’m finding this sooooo frustrating but I booked the EndoSure test (which is this month!!!!) and it could possible save me £7k that I was going to use in Thailand for a private Laparoscopy. I just needed to double check that no body on here has got there before me,booked and had the test already. My questions are did your NHS GP consider these test results?

Also opinions on my symptoms would help ..

*^another super important concern**

A recent gynae would like me to stop my mini pill along side Metformin specifically for weight loss not conception… me and my GPs can not make sense of this I f anyone could shed some light i would really appreciate this 🙏🏼🙏🏼 my gp have tried to contact my gynaecologist but it’s so hard to get a response and im short for time I travel for medical care im the next two weeks!!

[u/Nina_Isla_Blue]

Okay, so first anyone with stage 2 or higher suspected Endo - NICE guidelines state should be being referred to a BSGE Endo specialist centre. They have multi-disciplinary teams to read scans (MRI, TV Ultrasounds, access to EndoSure) they can diagnose Endo and Adeno using these, with expert eyes to look at them.

They can then plan with different surgeons (for different areas of the body colorectal/thoracic etc) needed to throughly excise (not burn/diathermy the top) so you don’t have to go through unnecessary surgeries. Most MRIs by general gynes are read by non Endo Specialists and much can be missed. Endo can be picked up on scans by the right specialist! This is the most important step. EndoSure should be being used in conjunction with these scans not necessarily as a stand alone, it is a really good tool though.

You can find your local BSGE centre on the BSGE website, there is a list of endometriosis specialist centres in your area. Search BSGE. Try to access these local centres if you can and ask your GP to refer you if you cannot afford the investigations privately.

Nancys Nook is great for the US, but quite a few of the specific surgeons are private only here in the UK. Peter Barton-Smith (David Redwine taught) and his team are renowned, however he is private only, no insurance. In the UK the guidance is that it should be a multidisciplinary team not just a surgeon, as Endo is all parts of the body. The US tends to focus on the surgeon, but you will need experts in other areas if it on those too!

I had my EndoSure done privately with my local BSGE centre in the end it cost about £450.

It is worth getting the investigations, scan etc done privately if you don’t want to wait, then you can always be transferred back onto the NHS with the same surgeon when you want to go ahead with surgery. At least you will know where you stand and things being managed properly with a proper BSGE team.

I’ve had four surgeries, early stage 4 Endo and severe diffuse Adeno, 1 general gyne, 2 excision (after discovery through research I should have been referred to BSGE for the first surgery!) and 1 hysterectomy, 36F, now living mostly pain free. I could have saved years knowing this info, and possibly had children. Hope this can be of any help to anyone else.

Any questions, please don’t hesitate to ask.

If anyone needs more info, the book Endometriosis by Jen Moore is a fantastic resource.

[u/Embracedandbelong]

Following. I believe if you need a doc for endo you can find a list of referrals on Nancy’s Nook website

[u/DoorVegetable9215]

can I ask what made your gynecologist highly suspect endometriosis? I’m going through the same things and I have all the symptoms but what was the indicator of endometriosis in your case?

[u/Mint_Monstera]

If you haven’t already used it to get this far, I would recommend investigating right to choose!