Just had Adenomyosis diagnosis - your tips and help needed!

[WorthyPanda]

Following my last post where I ended up in hospital with very heavy bleeding during my last period, I was sent for a transvaginal scan and have had results today via GP that I have adenomyosis.

I am 45 and perimenopause is in full swing. GP plan is to double my desogestrel (mini pill) daily, tranexamic acid during periods as well as ibuprofen and she has booked me for a mirena coil at the end of Feb. I did express concerns that the coil would just fall out with the huge clots I have during a period, but I agreed to try as having read on here, it seems that’s the first line of defence and I will need to have tried that before other options are offered to me.

Can anyone advise anything else? I am absolutely terrified of my next period arriving this time next week. The bleeding is so heavy and clotty that I can barely leave the house. The gynae consultant in A&E gave me tranexamic acid last month, two tablets three times per day, which did help to slow the flow a little, however it made me feel dizzy and nauseous and like I was drunk! The GP said to try taking the TXA two tablets twice a day instead to see if that helps at all.

So basically I am scared! Scared the bleeding will be out of control again and scared the TXA will wipe me out for two days again!

I have adenomyosis. Three years ago I became so anaemic because of it that my hair fell out leaving me with a bald patch. Had strong iron supplements but couldn’t get on top of it. I had resisted having a Mirena as had heard many horror stories on here about them but in the end the gynae said it was a Mirena or a hysterectomy. I opted for the Mirena and 3 months after I had it put in, my periods stopped completely. Hair grew back and no more anaemia. It wasn’t till my blood went back to normal that I realised how exhausted and shit I’d been feeling for so long previously.

I have adenomyosis. My first Mirena didn’t work at all - made no difference to my bleeding or pain. The second one also didn’t work, and fell out when I passed a clot. I then had surgery to remove my endometrium - I had this done privately as it was during Covid and waiting lists were erratic. It’s an outpatient procedure and recovery was very quick. I had a new Mirena inserted at the same time as the surgery. My periods stopped completely and it’s been life changing to live without constant pain and bleeding.

Recently I had that Mirena removed as it was at the end of its life. I’m now on Femseven conti (combined HRT) and my periods haven’t returned.

Good luck OP, adeno is torture. I hope you find a solution.

I think your GP had a very good plan. The mirena is good at thinning your uterus lining, so often stops periods or means you bleed quite little, it also helps with pain as there's less bleeding so less cramping. It can take a few months to settle and kick into gear though so continue contraception for 3-6 months alongisde it.

I would ask them prior to your mirena to make sure you have numbing gel, an injection into your cervix, lube etc to make the insertion the most comfortable. Also take paracetamol and ibuprofen 1h before the procedure to help.

The other I would say is ask your to GP to start mefenamic acid or naproxen (they are NSAIDs so anti-inflammatories) which help to essentially stop inflammation, pain, cramps etc. You should start taking them before the pain starts so like 2-3 days before (or whatever works for you) and then during your period. It's really effective for many.

Also I'd up your dose of tranexamic acid to 2 tablets up to 3 times a day and make sure the dose is at least 500mg. That will really help to stop the bleeding and again start it 1-2 days before your period as well. Or see about trying northisterone as it is similar to TXA and you may not feel the side effects in the same way, again it's so important to start it before the bleeding, I'd say 3 days ish as that is typically okay for me, particularly if you get lots of clots. Hope this helps, but feel free to ask any questions as well.

Also I'd get your bloods done by your GP @WorthyPanda to get iron levels, folate etc. If they are low definitely start iron tablets and depending on the levels perhaps an infusion as heavy clots can have a big impact.

I had adenomyosis which culminated in bleeding continuously for 3 years. I also couldn't tolerate TXA, made me feel so nauseous. I tried a coil - which I did not want - and for many reasons it was not a good experience. They finally agreed to a hysterectomy which has changed my life completely. Hopefully the coil will be successful for you, it's a terrible way to live and utterly exhausting.

Severe endo (stage 4) and adeno here plus PMDD to the point of suicidal thoughts actions and self harm every month 👋 the joys! had full hysterectomy and changed my entire life. They took the ovaries fallopian tubes everything. I was in my late 20’s, it was a very severe case. Happily living on HRT now life is amazing in comparison.

I had adenomyosis and two adenomyomas. The coil didn’t work for me and became dislodged and bleeding increased. I had a hysterectomy at 38 and it was life changing

I have adenomyosis. I’m on no hormonal contraception and will continue to refuse because it makes me crazy. I take mefenamic acid which slows the bleeding. My scan was in August and I’m finally seeing gynae in a couple of weeks. I’m 37, had three kids, I’m going to push for a hysterectomy