Adenomyosis support thread

[Redandpinkstripes]

I posted this week about there being a high possibility I have Adenomyosis after struggling for many years. Another poster came up with the idea of a support thread, which I thought was a great idea.
I have been in severe pelvic pain, that worsens significantly before my period. I have had a few episodes where the pain has been so bad, I've almost passed out. I've had the Mirena coil, which has helped a bit. I was put on Prostap, which was brutal as they thought it was fibroids causing it. They then added HRT, which made my symptoms 100 times worse. I was signed off of work for a month. The pain was so bad I ended up in a and e. Even Morphine didn't touch the pain. After stopping the HRT, the pain has reduced but I still have really bad days. It affects my bowel and bladder too.
The pain is deep in my pelvis and left ovarian pain that radiates to the back.
It would be great to talk to others that understand, as there is so little out there. It doesn't just affect you physically but mentally as well 🥺

I just wanted to share an update with you all as it might help those trying to make the decision. I had hysterectomy via robotic laparoscopy on Saturday. I'm up and about, the surgical cuts are small and the back pain has virtually gone away. All things considered I feel pretty good and I'm only taking paracetamol now. I'm feeling hopeful that normal life might return.

I'm glad to hear it's all over and you are recovering well. Please take it easy, as it is a major op xx

Thank you. Xx

Hi hun I am exactly the same as u.. I need advice I have been out on postap and I am on day 9 the injection and hrt have made my pain worse I am crippled in pain today in my pelvic area.. what symptoms did you have ??? I feel as tho it’s made my pain worse

Bless you. I had excruciating pains in a pelvis. The estrogen, in the hrt will be making your symptoms worse. I'm now on Tibilone hrt, which is better for Endo/Adeno. I've also been referred to an Endo specialist. What is the long term plan for you? I've since had a hysterectomy xx

@Redandpinkstripes do u have endo and adeno ?? And how old r u if u don’t mind me asking? I am under a endo specialist and he’s the one who given me the injection while I wait for surgery.. also did u keep it ovaries? As for ur pains was they every day coz mine are every day since this injection and HRT

also hun what’s tibilone?

im sorry for all the questions I just feel so alone in all this then come across this thread and got a little hope ❤️‍🩹

I had a full hysterectomy for fibroids and Adenomyosis. They removed my ovaries and fallopian tubes too. They have always said I didn't have Endo but my pains have all flared up again since starting hrt, so they are now saying it must be Endo, as my pain is hormone receptive. My pain is every day. Before my hysterectomy I was in pain everyday but it would get much worse before my period.
The consultant switched me to Tibolone hrt. It's a tablet, which contains a small amount of Estrogen, Progesterone and Testosterone. It is better for Endo, apparently.
I'm almost 50 :)
I know that feeling too well. Please ask away. It's a lonely place to be ❤️

@Redandpinkstripes thanks for ur detailed reply .. yes my pain is every day I’m 32 and I have adeno and deep endo I also have adhesions … a week before my periods I feel like I’m in labour and I’m not even been extra…

so did you have prolonged periods with ur adenomyosis where u would bleed for weeks and then have a little break in between until u start ur periods again…

and i really do think it’s the oestrogel that’s causing me so much pain I am having g really bad cramps and knife like pain in my pelvis area…

im down for surgery which is a 16 month wait.. so still got 15 months to wait for that… I jus want to feel normal and not constantly 247 in pain :(

You are very welcome. I am sorry you are suffering so much. I was exactly the same pain wise and almost passing out. My periods were always every 28 days but painful. The Mirena coil helped a bit, as my periods eventually stopped.
The estrogen will be activating the Adeno/Endo. Maybe ask to try Tibolone? It annoys me that the professionals seem to know less than we do!!
Can you ask your gp to expedite your appointment? Mine did for me and I had it 3 weeks afterwards. Thinking of you.
Also, have you got a plug in heat pad? It has been a game change for me. I'm always happy to help/chat xx

So great to read everyone’s experiences in this thread, sorry for those still struggling with symptoms.

I have had painful and heavy periods all my life (now 44), but was only recently diagnosed with likely adeno following a couple of ultrasounds. Wait to see an NHS consultant was 9 months so have used my private healthcare and had a really disappointing initial consult!

He told me that periods do get heavier as women age and recommended Mirena which I’m reluctant to take due to having chronic migraines and a history of hormone related mental health issues (hospitalised twice after having each child). He wasnt interested at all in the impact on my daily life (missing work, unable to leave house, every weekend on the sofa with hot water bottle) or the pain I’m in every day.

I am on the waitlist to see NHS next year but feeling pretty hopeless about being in this state for years on end. Thanks for listening!

hello! Not necessarily looking for answers but i’m off to see my gynaecologist Thursday so I feel I want to go well prepared.

I had a polypectomy and mirena fitting following a diagnosis of adenomyosis earlier this year. I’ve had a mirena before, 13 years ago (for 5 years) and got on with it well. I only didn’t replace as DH had a vasectomy. In the intervening 7/8 years the adenomyosis has crept in and got worse to the point I was flooding and gushing and it was very impactful. I was also anaemic.

In had the surgery and didn’t bleed for a week after. Then I had what felt like a period, but after day 5 it didn’t stop, it just became heavy spotting for the next 21 days. Then another heavier spell (assume another period) and another 2 weeks of spotting. A week of being clear, then on day 28 another period starts - it’s about 50% less than pre-surgery in terms of loss, but I’m in more pain, I feel
bloated, my boobs are so so sore, and the worst thing of all is my sleep. About a week after the mirena I started waking up sweating, then every second or third day I’d have an incredibly vivid, scary dream. Now it’s increased and it’s every night - terrifying dreams where I wake up hyperventilating. They usually involve someone who I’ve lost and I can hear and see them vividly. It’s quite upsetting.

I never had anything like these symptoms on the mirena before - I didn’t have a single period from
day 1, and no side effects. I am assuming the mirena is acting differently due to the adenomyosis?

the periods are shit, but the night terrors are the worst. I don’t know what to ask for at the appt. I don’t know whether to persevere or not. It was fitted mid-June.

I would find a different consultant if I were you. The NHS route could take a long time. There are good consultants out there who will take you seriously. I found a good one near Manchester who has been great.

Thanks for the response. Glad to hear you found a helpful consultant! I did as you suggest and have booked an appt with a different specialist tomorrow so hopefully he is less dismissive!

What have people’s experiences been of requesting a hysterectomy? I’d like to have the whole lot removed if it will give me back some semblance of normal life, but I do understand that they want to try all other options first.

Oh good. I'm pleased for you. I didn't like my first consultant so did a lot of research to find my second. I was in the same state as you. I just went and asked for a hysterectomy. She went through the various things they ask you to try before that (mirina, and the zolodex injections and mini pill etc). I'd done all of those things and had an MRI showing the diagnosis so she was like when shall we do it? I'm six weeks post op now. Not entirely pain free but vastly better than I was pre op.

Joining this for the first time for support - adenomyosis diagnosed on USS in April after a year of symptoms (predominantly very, very painful periods). I also get more widespread pelvic pain that seems to be endo-like.

Tried POP for 3 months - no help and massively worsened mood. Spoke to GP today and they've suggested COCP. I cannot stand the thought of another coil/coil insertion (have had this before and hated it).

What surprises me is I haven't been offered any onward referral to talk to a specialist and the GPs don't seem able to answer all my questions. We have a local endo service but I was told the waiting list was "years" and I wouldn't be seen as not severe enough. I missed a day of work each month last year - how bad does it have to be to get any form of referral? Or is this just another postcode lottery?

@TheWildRumpyPumpus you do know there is very little research on adeno? So the gynaecologist was just telling you a current theory of women's menstruation and anatomy.

My periods are similar to yours and I was told when I was a teen by a friends and a sister that my periods were not normal. Oh and worse for me the consultant was trying to challenge whether I had adeno at all because apparently my uterus wasn't misshapped.

@Annabel28 For the NHS they have to try you with all contraceptive types they can and if none of them work/you have side effects they can refer you on. Depending where you are in the country it can take anything from 9 months to years to have an initial NHS consultation. Also some consultants aren't that helpful - I got more helpful information from the registrar, who was educated abroad, than from the consultant I saw. Both were women.

Good news to report, I had an appointment today with a gynaecologist who asked lots of questions, carried out his own scan and confirmed on the spot adeno and mild endo. Started talking about surgery options while he was still scanning me, I’m so relieved!

He has sent me away with some literature about types of hysterectomy to read before we meet again in 4 weeks. Hysterectomy in December or January depending on my work commitments.

@Annabel28 sorry to see you have needed to join the thread. Can you return to GP and insist on a referral? I’m surprised they didn’t refer as soon as you were given the diagnosis, it’s such a postcode lottery.

I've just had my MRI results today via email

My consultant appointment has been cancelled as he's off sick for the rest of the year so I'm in limbo

@PawsisShady ah that’s frustrating. Are you seeing an NHS or private consultant? If private could you ask to be referred onto a colleague?

NHS, I'm under a specialist endometriosis centre

This is my MRI results

Findings:
The anteverted uterus demonstrates changes consistent with diffuse adenomyosis.
There are endometriotic cysts in both ovaries, 8.2 cm on the right and 3.3 cm on the left.
The ovaries are
in a kissing position, is here and to each other and to a dense desmoplastic change on the posterior serosal surface of the uterus.
There is also some focal fibrous adhesion to the anterior surface of the upper rectum

Conclusion:
viscera appear clear.
Deep infiltrating pelvic endometriosis, with prominent bilateral ovarian endometriomas and adenomyosis

Hi I've stage 4 endo and was diagnosed with adeno earlier this year by US. Mri last year missed that but suspect ovary attached to bowel so had to be referred to a specialist. Been on prostap and evri conti since may. Surgery booked for next week no hysterectomy for me yet though. Really been struggling with the pelvic pain and pressure the last 1 weeks and leg pains. Does anyone else find there arms feel weak?

I'm so pleased to hear this!

Hi. I've just found this thread while I recover from a hysteroscopy and womb biopsies I had yesterday under GA.

I've had horrendous painful periods my whole life. Very short cycle and then bleeding for 8-9 days. Always had to use mefenamic acid as a teenager. Suspect I've always had adenomyosis. I've had two kids by c section and after it felt like the bleeding and pain was worse.

I had an u/s scan about ten years ago (after kids) and the sonographer just casually mentioned I had adenomyosis but didn't refer me to anyone.

Because of the pain and bleeding causing anaemia my GP put me on the desogestrel mini pill, which I know a lot of women can't tolerate but it was great for me. It took 6 months or so to settle my pain and bleeding but after that I had almost zero bleeding and only the odd cramp. This was life changing for me and all was fine until I started peri menopause and had horrendous migraines, insomnia, palpitations, night sweats, rage and irritability etc. So I started HRT. 2 pumps of Oestrogel with 100mg continuous utrogestan seemed fantastic as my peri symptoms got much better but I was told I could increase to 4 pumps of oestrogel so I did to try and reduce my symptoms even more.

Unfortunately I then started to get horrendous pelvic pain. Like maybe go to A&E pain. Full doses of paracetamol and ibuprofen plus Tramadol and still in agony and awake for hours at night. I had a 'normal' scan and blood tests and the nhs gynaecologist said it was all ok ??! I asked if it could be the hrt and she said I wouldn't think so . I dropped my oestrogel dose myself and it made a big difference. But in the meantime I had another u/s scan and my uterus was bulky with a thickened lining and they said it looked like adenomyosis. They tried to get into my womb but couldn't get through my cervix. I also have a retroverted uterus and smears can be tricky. Two junior gynae docs were poking around for over an hour with a probe and various instruments and it wasn't great. So they listed me for a hysteroscopy under GA which I had yesterday.

Just before this I paid to see someone at Newson health who said the extra oestrogen has angered the adenomyosis and I should have been given more progesterone to go with it. She recommended I have a mirena coil in while asleep. I was reluctant but knew I wouldn't be willing to have one in without a GA due to horrible previous experiences. So time will tell if it helps. The gynaecologist who did the procedure said the womb generally looked ok but they can't see adeno on a hysteroscopy, just ultrasound and MRI. I asked if I should carry on with utrogestan and she said the mirena should be enough but I'm a bit about this bearing in mind that the mirena gives you less progesterone (albeit direct into the area) and I was on the mini pill and utrogestan and it still wasn't enough to counter the extra oestrogen I was taking.

Have any of you who haven't had a hysterectomy but are in peri menopause been given advice about progesterone dosage for women with adenomyosis?

Sorry that was long!

Hi. I have adenomyosis and recently I've noticed a slight pulling feeling like a stitch (feels like in my womb) the odd time I move/stretch when picking something up or doing exercise. TVs clear apart from adeno. Before I see my GP, could this be a symptom of adeno? Anyone else experience this?

I've had painful heavy periods my whole life, I took mefanamic acid as a teen. Things improved in my mid 20s. My DD was born three years ago where I had a post partum hemorrhage. I'm anemic and been fighting for the last at least 18m with heavy flooding periods, bloating and pelvic pain. Finally had my ultrasound, the lady doing it said all looks ok but I've had a call from the GP today saying Adenomyosis.

The number of GPs who fobbed me off over the years!

Want to start trying for baby number two but now thinking perhaps I should hold off. Worried about my fertility now though so wonder if we should crack on.

Really hoping the wait isn't too long.

I've been with Bupa via work for about 2 years so going to see if they might cover it, not sure if this might count as preexisting.

I'm only 33 so it looks like a hysterectomy very likely in my future.

I've heard the Merina coil can stop your periods, so does this slow down the progression? Or just relieve the symptoms? I'm guessing the latter?

I'm still breastfeeding so thinking I may need to stop if we want to ttc.