Help with first steps

[TandE]

Hi. Firstly wow, this forum is amazing.

After nearly 20 years of pain (am now 49) I have finally had a ‘vague’ diagnosis of deep endo following an MRI. The gynae consultant says that the scan shows adhesions fusing my ovaries and uterus but anything other than that would need further investigation (I have persistant pain right up into my ribs, down legs and around my back, plus the usual chronic heavy periods).

Whilst relieved to finally have some reasons for the pain, I am now in a huge state of confusion. I don’t think the consultant had any really specialist knowledge of endo. Despite saying it needed investigation, her two proposals were either the merina coil OR hysterectomy. Is it just me or do those seem like two massively polar treatment options?! After only a little reading I can see there are many more stages of diagnosis before leaping to ‘whipping everything out’ and given I am only a couple of years away from full menopause it seems an extreme first route. I am really averse to the coil having had really bad reactions to hormone treatments (for pcos) in the past - whilst willing to try them again orally or via injection I don’t want anything internally implanted. And I assume whilst relieving cyclical symptoms they would not fix any damage already done anyway.

Should I ask to be referred to someone with a more specialist interest in the area - is that something that is even available on the nhs?! I am willing to pay for a consultation with a specialist, but I cannot afford to be treated privately. Any advice or recommendations at all would be gratefully received.

Thank you.

[Janeflowers]

Hi , I had my first surgery when I was 48 at that time I had no idea my endometriosis was so bad . I had a partial hysterectomy which gave so much relief ( uterus removed only) Now 7 years later I’m looking at the prospect of more surgery to remove my ovaries as bilateral ovarian cysts 7cm stuck to sump of cervix and tethered to my bowel again. So I guess your consultant view is it’s better to take all out or give the hormonal treatment a try and see , did they not offer to put you on medically induced menopause treatment? You can have your treatment on NHS but you do need a consultant who has specialized in endometriosis not just any gynecologist,

[TandE in reply to Janeflowers]

Thank you so much for your reply. I’m so sorry to hear what you’ve been through. May I ask did you have laparoscopy prior to your hysterectomy? I haven’t even been offered that. I will ask my current consultant if there is an endo specialist I can talk to.

[Janeflowers in reply to TandE]

For this potential hysterectomy I have been offered a Laparoscopy, this is due to finding the extent of surgery required and surgeons required as well as the potential risks for me . I would say this is pretty much essential.

[Janeflowers in reply to Janeflowers]

I really hope you find the right care , definitely look up endometriosis specialist in your area and check your consultant’s specialties it should say on the hospital website

[BloomingMarvellous]

Hello

The mirena coil is largely a management strategy, with adenomyosis a hysterectomy is viewed as a solution ( and at that point they also need to excise any other endo ). You maybe told it is the “ultimate solution for endo “ and likewise be told that with menopause the endo etc will “stop being a problem”. Neither is unfortunately true but the experts keep promulgating it. With adenomyosis only, a well executed hysterectomy can be a game changer.

[white61]

you can have surgery to remove the endo, maybe ask to see a specialist or have a second a opinion because those two options seem like two extremes