Prostap injections/Adenomyosis

[buddy1712]

Hi, not been on here for a while, nice to catch up. I was wondering if anybody could help me please? I'll try to keep it brief but bit of a story. I had suffered with heavy pai ful periods since having a twin section delivery, 1999 when I was 29yrs, I ended up having an endometrial ablation in 2013, I was then 43. My period went lighter although pain continued , pelvic and back pain. When I was 46 they went a bit scary then stopped for 16 months with menopause symptoms , gp did bloods and ended up on hrt patches confirming menopause. Everything became more settled for almost 2 yrs then pelvic groin tummy and back pain came back with avengence with a brown loss and tissue type, randomly. Started getting investigated at of 2019 but then the covid virus hit us and postponed a scan. Fast forward to eventual scan in August 2020, had transvaginal scan and get put forward for 2 week emergency appointment. The oncology gyny did hysteroscopy as they suspected endometrial cancer as seen what they said was a black area possibly a blood clot? Got all clear thankfully but then went to normal gyny for further investigation, this unfortunately like everyone was a phone consultation so short and brief. He says on a laparoscopy results done in 2013 during my ablation that he cant see endometriosis although he says it could be adenomyosis. Hes started me on 6 months of prostap and then reviewing me on the phone to see how I've done. Only had 1 month due to go back for 2nd about 10 days. My pain was just as bad but have terrible hard swollen tummy, random old blood still. Could anybody please tell me if this injection will determine if it is adenomyosis, just scared in case I go through the pain still and then nothing at the end of treatment. Side effects have also been horrendous, headaches nausea and joint pain, I already suffer with fibromyalgia and ME since 2015 so could do without unwanted side effects. Should I just bare with treatment and see how it goes? Thanks in advance for listening sorry its along story

Mandy

[minxy1408]

Hi, I can totally sympathise with what your are going through. I went through it at 23yrs old and eventually had a total hysterectomy at 25yrs old. I was diagnosed with ME at the time and later in my life with FM. After the hysterectomy I was also told I had andenomyosis which they where surprised about because they previously though it was only happening in much older women. I had the hormonal stomach injections to shut down my ovaries to see if that could control the symptoms before surgery but they didn’t work and made me feel horrendous. I’m not sure if I can help and I don’t know what your options are going forward but I’m her if you want to ask anything. The hysterectomy to a certain degree helped but I guess that’s bit of a drastic option .

[Nephilim_Mumma in reply to minxy1408]

Hi

I went 20+ years having my adenomyosis misdiagnose from being told I was too fat to being a hysterical woman and I should get in with it.

My symptoms were horrific in the end and my gynaecologist said he didn’t want me to go through any other treatment other than a hysterectomy (I was 41) as the only way to “cure” it was surgery.

I have the added “bonus” of being incredibly sensitive to a lot of pain relief and hormone based therapy.

You know your body and if you feel you can bare with it then I would but there’s no guarantee that it will help.

I’m now 7 years post op and I’m glad to have my life back - if plagued by Fibromyalgia, ME and everything else.

[buddy1712 in reply to minxy1408]

Hi all thanks for reply. Think I will try and stick out another month of injections and see how it goes. My mum keeps telling me to get a hysterectomy for a while now, ya it seems drastic but if stops at least some pain would be a bonus. Thanks will try endo/adeno site

[Hazel_Angelstar Administrator FMA UK Staff]

hi Mandy, while there may be a few people on this community who can relate to your questions - you may find it more helpful to post this on a group for endometriosis/adenomyosis if there is one, where you are likely to get more replies.