Talk to me about your adenomyosis.

[Mamalamadrama]

I got diagnosed last year with adenomyosis. After years of a slight niggle on left side of pelvic area. But now this year it has got considerably worse. I feel pressure in my rectum and pain in my leg. Does this sound like adenomyosis to you or something else.

Something else. Adeno causes crippling pain in the womb primarily as the muscle is invading the endometrium as well as horrible heavy bleeding with prolonged or multiple periods per month.

Secondary symptoms include pain in leg or rectum etc but you would have the primary ones first if that makes sense.

I have adeno and definitely get the prolonged and heavy bleeding etc but pain in the rectum is very much an issue for me.

@Mamalamadrama I was told the only thing to get rid of the pain, heavy bleeding and associated symptoms is a hysterectomy which I had. It was hell before I had the hysterectomy.

Heavy bleeding. Prolonged bleeding. Cycles which would be regular then not, then regular again.

Tranexamic acid helped reduce the flow but prolonged the bleeding further.

Anaemic, that’s been fun too - not.

No pain whatsoever.

mirena coil has helped. I still have periods on it but as I’m 52 I hope not for much longer anyway.

My gynaecologist told me I had adenomyosis a few months ago when I had a hysteroscopy. I hadn't a clue as I’ve never had any symptoms whatsoever. I'm wondering if it developed postmenopausally as it never affected my periods.

Was told they could pick this up on a private scan or not this ademyosis in recent times.

When a coil was shuved up there as the only answer, they certainly couldn’t care less.

I had really painful periods with constant spitting between. I was diagnosed with adenomyosis and endometriosis. I'm not a big fan of surgery, so my gynecologist suggested the mini pill as he thought the hormones in the coil wouldn't get to the more distant bits of endo. It's taken a double dose of the mini pill to stop all of the bleeding, and quite a few months too. But it has worked and I'm pretty pleased with it.

I am 52 and have recently been diagnosed with adenomyosis and small fibroids after seven months of non-stop flooding. I’ve never had any pain with it - just an inability to leave the house for more than an hour or so. Also diagnosed as very anaemic. Referred to gynae who put me on Provera, iron tablets and tranexamic acid which worked for a week but back to daily heavy bleeding (although not flooding). Since on the Provera I now have dreadful period pain. I am awaiting a date for a hysteroscopy and then endometrial ablation. I have no social life, relationship ended, have had to give up cycling, hiking, gardening. I’m single and have a lowish income but seriously considering a bank loan so that I can go private for the ablation. I am at the end of my rope with it all.

After recent scans I have diagnosed with adenomyosis, can anyone tells we what happens next and how do I know what stage it is at?

@Wood2376 do you have horrible symptoms? I get bladder pressure from time to time, but the back pain is the worst. I'm waiting for my MRI results to see if it's got worse. I had the mirena coil fitted in November. Periods have slowed down now. I was bleeding very heavily each month, with some periods lasting 19 days. I am glad those have settled, but the back pain is crippling. I haven't been able to work for a month.

@pilates Do you have the hysterectomy privately if you're based in the UK?

I literally am exactly how you've described back pain is a killer and feel like I'm always in the verge of getting cystitis from pressure, I've been given tablet to ease the bleeding but I don't think it helped now been given northisterone just to give me a break

I had it under the NHS about 13 years ago. I had to literally try everything under the roof before they agreed to a hysterectomy. I ended up in A&E as I was in a bad way and I then got fast tracked. I won’t lie it was hell but life dramatically improved after the hysterectomy.

@Wood2376 I'm 44 but feel 84, and that's the truth

@pilates I went to A&E also a few weeks ago because of the pain, but they just said take co-codamol and wait for scans. I am glad a hysterectomy worked for you in the end

It was more the loss of blood - I was very anemic. They kept me in overnight and I remember the young male doctor promising he wouldn’t let me slip under the radar. I could have kissed him.

Yes, I found out after an MRI for something else. I'd say I have no symptoms because I put my heavy periods down to peri and fibroids. I have almost no period pain.

I had a scan in January and having another end of may, been referred to gynaecologist but that's a waiting game, I've never really suffered before then suddenly out the blue it came the heaviest periods and the pain! found out in Jan I have adenomyosis

Good doctors who listen are hard to find!

I was told I had it incidentally to other investigations on an ovarian cyst.

My periods were heavy and painful, and I was anaemic. I just thought that was my normal. The Mirena coil has been life changing for me.

Hi all, I had an ultrasound in October after developing extremely heavy bleeding from around July. It was a standard NHS gynae one but the sonographer wrote 'suspected Adenomyosis' on my report. I've since been on waiting list for gynae clinic to investigate further and am still awaiting an appointment. I'm getting some relief using tranexemic acid for the flow and can mostly breathe through the rectal pain. But oh my goodness the thing that is most horrific for me is the back pain. All the time but especially on my period. How are others managing it? I've even finished a course of private physiotherapy to absolutely no avail because I suspect you need to see someone specialised in this particular type of pain - not just someone who says to work on strengthening your core. I use ibuprofen which helps but would love to know if others have had success with any other treatment? I really think I need an MRI but can imagine getting referred for one of those is a bit of a lottery. I'm just so miserable - it was absolutely agony even just getting my socks on this morning 😢

@secondtimelucky87 I am so sorry you are going through this. Last year, I had constant back pain from March until my private hysterectomy in July. I was off sick from work, could only stand for 2 mins and only walk 300 yards before I needed to stop and sit down. I was taking oramorph, co-codamol and inbuprofen. The only mild relief I got was from my TENS machine. There is a really supportive group on Facebook called "adenomyosis support uk" with 6k members. Lots of advice there from women all over the UK. Come say hi x

I'm so sorry it took me so long to reply and thanks so much for your post. I will definitely look up that Facebook group thank you. It's just utter misery isn't it. Mine is especially excruciating on my period but there isn't a day in the month I'm not in pain. I don't know what to do really. I'm on the NHS waiting list for gynaecology still and have been since October. But even then I wonder what they could do to help with this particular symptom. 5 weeks of physio made no difference and I suspect it's because if you have chronic inflammation, physio just won't touch it. I'm wondering if there's any point in pushing for an MRI just to try to find out if there's anything specifically wrong with my back. When I saw the musculoskeletal consultant I wasn't in a particularly bad flare (so it goes!) so he wasn't overly concerned but mentioned we could consider MRI in future and hopefully Bupa would cover that too. I'm glad you managed to find a solution! Thanks again for taking time to reply x