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[Dibly]

Hi, new member but hoping someone can help. I got diagnosed with adenomyosis about 6 years ago while having ivf (which failed). I was given livial and hrt as a treatment option, but after gaining a stone I stopped both.  I'm now 45, have only had two periods in the last year, the last in March. I'm having loads of hot flushes, feel tired and irritable, so in August went to see my gp and was given evorel conti patches. Hot flushes immediately improved, but adenomyosis pain started with a vengeance. Pain and bloating were unbearable so I stopped the treatment.

I have complex crohns disease, had loads of surgery, so a hysterectomy is out of the question - please could someone recommend a form of hrt, or anything that might help that wouldn't exacerbate the adeno? I start a new job next week so I'm keen to not be a dripping mess  .  Thank you.

[CLKD]

   - your GP should have given you HRT to protect heart and bones  .  How are you getting on with the new prescription?

Off to google your condition 

According to the NHS advice: Any symptoms will stop when you have the menopause.

Also:  hysterectomy (surgery to remove the womb) can be an effective option for women who
do not want to become pregnant – it should not be necessary to remove your ovaries (unless you also have endometriosis) so you should not enter menopause after the hysterectomy.

• uterine artery embolisation – tiny particles are injected into your blood vessels through a catheter in the groin. The particles aim to cut off the blood supply to the adenomyosis. This is less invasive than surgery and may help preserve fertility. It is likely to improve symptoms for a couple of years. Symptoms may recur in the future, however.

Sometimes treatments for another condition (for example, fibroids) have been found to improve symptoms of adenomyosis. However, these treatments (for example, endometrial ablation and surgical excision during myomectomy) are not advised for the treatment of adenomyosis only. This is because they reduce the bleeding, but not the pain.

[CLKD]

Adenomyosis Advice Association
w: www.adenomyosisadviceassociation.org

Pelvic Pain Support Network w: www.pelvicpain.org.uk
e: [email protected]

Hysterectomy Association
w: www.hysterectomy-association.org.uk e: [email protected]


from the NHS Advice on the condition

You could also contact the crohns support group for advice and suggestions?

 

[Dibly]

Thanks for the replies, I'll try the other forums, but adenomyosis association seems to concentrate on either fertility or hysterectomies, and neither are relevant to me. Feeling a bit lost, know I need hrt, but unsure which won't exacerbate my symptoms. Has anyone got this condition and got any tried and tested advice please?

[CLKD]

It's difficult to get information ......... maybe look at the 'overcom' web-site which is for ovarian cancer but may lead you to other routes.

You could also send a person e-mail to Dr Currie on here.

[MIS71MUM]

Hi
I had adenomyosis too until I had a hysterectomy.
I know what you mean about the pains from it. My consultant advised me to try a Mirena to stem the bleeding and it gives a steady small amount of progesterone. Then you can try a patch, pill or gel for the Oestrogen. Maybe start really low so the lining doesn't shed too much.
Hope this helps

[hoping4best]

Hi Dibly,
I have adenomyosis that was discovered when I had awful cramps and bleeding most of the time when I was using continuous HRT. I have premature ovarian failure and was post-menpausal before 40. I'm almost 43 & was considering a hysterectomy until I found a new endocrinologist who put me on cyclical HRT (estradiol patch all the time, 12 days of progesterone if I haven't had a bleed in the last calendar month). Now I just have a few days of cramps and bleeding every 1-2 months. MUCH better. It took some time to figure it out—it can take some time for things to settle, if you can tolerate some experimenting.

Good luck!

[CLKD]

  Girls - always better to have personal stories