Gynae appointment

[LawsTra]

Hi All,

Needing some advice as I have finally got a gynae appointment next month and need to know what to ask about and what I want.

For some history, in 2000 I have been diagnosed with PCOS, 2005 Stage 1 Endo, 2021 Stage 4 Endo with uterus and ovaries stuck to bowel and Fibroids and Adenomyosis, which the forgot to tell me about at the time and only found out in 2023/2024.

Just because initially, I had no symptoms, I have had no follow ups, referrals to speak with specialists in this area or offered any potential treatments to prevent further worsening.

Despite asking for full hysterectomy, I was told that now I’m menopausal and on HRT there is no point as symptoms and pain will settle down and I will just have to live with pain. Although it was mentioned there has never been a follow up regarding getting a sigmoidoscopy to check what damage if any with the adhesion with the usterus.

As you can imagine this was not acceptable and I told them I was not prepared to live the rest of my life in pain or without a sex life. I have constant pain which has worsened over the last few years, can’t go to loo, without pain and lost relationships because I can’t be intimate due to pain.

The very unhelpful female Gynae surgeon I am seeing, is the originally one saw privately a few years previously, then a few years later GP referred to NHS and I got the same surgeon.

All I want is a full hysterectomy but despite meeting the criteria for this I have been denied all because I am menopausal on HRT. I am already gluten and dairy free this eases the pain and inflammation. Pain meds help but I don’t want to live the rest of my life popping pills.

Can anyone advise what I should be saying to push for proper treatment instead of being fobbed off. Any advice appreciated.

[KittyTherapy]

Hi there,

Im so sorry youve had to endure all of this.

Treatments are usually either pain medication, hormonal treatments and/or surgery.

Are you under a BSGE centre (accredited endo centre) ? -

bsge.org.uk/centre/category...

Not all gynaecologists are specialists and this really matters. (I'm currently under a non specialist and have had some problems too. I have my post-op follow up this week and plan on seeking a referral to a BSGE centre for ongoing management).

BSGE centres have endo specialists so are best placed to support people with severe endo and endo affecting the bowel (so sounds like you would meet the criteria)

I am 28 years old, not TTC at the moment but may change mind in the future. The main reason I had the surgery was for pain control. I had a frozen pelvis too (organs stuck together by scar tissue) an endometrioma and kissing ovaries.

Also, you might of already visited it but the FAQ section on endo uk website also has lots of helpful info which may cover some of your questions around hysterectomy, menopause and treatments:

endometriosis-uk.org/faqs

I hope this is helpful x

[Isthisforever]

Hello. I live in the USA and your statement, "finally got a gynae appointment" stuck out to me. Is it difficult to get medical appointments in the UK? It can be here sometimes, along with other healthcare system problems, and I'm interested in learning what women in other countries deal with. Thank you