Adenomyosis

[Loubarber7]

Hi, this is the first time on this site! Just wondered if anyone could offer me any advice. I have had pelvic pain for 2 years. Had a laparoscopy in June which found some endometriosis but they thought most pain probably due to Adenomyosis. I had a mirena coil which didn't agree so had it removed but the only thing it did do was stop the pelvic pain and bladder discomfort. I have now been told I can only be offered a full hysterectomy, and ovaries removed, but to check first they will offer me 3 months of an injection to stop my ovaries temporarily, zolinex or similar name I think? Anyway, does anyone have experience of having this injection as i am worried about menopausal symptoms and also the effects of a full hysterectomy. I am 39 and have had 3 children so not worried about not being able to have any more. Any advice gratefully received!

[Pepper1977]

I had a hysterectomy for endometriosis and it didn't work. It does work for adeno but I would be cautious about removing ovaries so young. Maybe see a pelvic floor pt to make sure you have no muscle tension and have nerves checked, they can cause pain symptoms. A peripheral nerve block might help

[Tabby77]

I'm currently undergoing the same thing as you, I've had this on and off for the past 15 years and only just this year been diagnosed. I'm 38 with 3 children and up until 18 months ago a very active life.

I am on my 5th Injection of Zoladex and it has helped the pain, I am also seeing a physio as my muscles are badly damaged as well which isn't helping. I can't say the side effects don't get to me as the hot flushes can be bad at times, I'm due to start the HRT patch on a low dose to try and combat the side effects. My consultant has gone through the options with me and has confirmed that the only way to get rid of this is to have a full hysterectomy. At the moment I am working on the muscle problem but everyone is different what might be ok for me may not be ok for you.

I think I have been on every single web site I can find to research as much as possible to get a better understanding of the condition.

At the end of the day I'm just glad I know now what I'm dealing with and can start to see a light at the end of the tunnel.

I wish you luck with what ever treatment you decide on.

[Hidden]

Hi,

I was in your situation about 7 years ago but didn't want to have the injections. I was told I was two young to have a hystorectamy at 39. My consultant said I could try being on a certain type of contraceptive pill but I would have to take it continuously to stop me from bleeding and therfore control the Adeno and the cycsts that I was also getting.

It is called Desogestrel, all my pain has gone, I don't have any bleeding and I have had no more cycst growth, no side affects to report either. It has been a God send.

[Jahou Pelvic Pain Support Netwo]

Hi I don't have adenmyoisis but do have severe stage 4 endo and had several surgeries. I think the suggestion by glenesk is a good idea. What gynaecologists never seems to tell their patients is the long term health issues having an a total hysterectomy and ovary removal can cause. I have stubbornly refused to have this surgery despite being constantly pressurised to have it by numerous doctors and employers. It puts you at greater risk of osteoporosis and doubles your risk of dementia. Yes you may have a few good years pain free but then get into your 50s and get these other health problems which will cause just as much pain. I am so, so glad I refused the hysterectomy and ovary removal. I was diagnosed with congenital scoliosis , which means I have a malformed vertebrae. Should have been picked up in my childhood but wasn't diagnosed until I was 30. I have developed severe spinal osteoarthritis as a result and needed massive spinal surgery last year. I dread to think how much worse it would be had i caved in to gynaecologists pressure as my bone density would have been a lot lower. If I have undergone a full hysterectomy I think I may have ended up in a wheelchair by now so please think about your long term health. hrt and calcium is nothing like natural hormones. Julia