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 🥺

Vixtar. That sounds really scary :( I too would have gone to a and e with a clot that size.
I hope you have spoken to the gp and they have prescribed something.
Naproxen is good for inflammation. Pain wise, I struggle, due them being constipation. I've found Co-dydramol really good for pain, better than Morphine. I also swear by plug in heat pads for pain relief. They are so good at relieving pain. Let us know how you are doing 💕

Hi, I'm so sorry you're going through this. I think you should go straight to A&E in these situations. They can suggest things to address the bleeding (hormone treatments that you may not want, for example, I didn't), other meds, and also refer you to gynae for scans and referral for surgery. They can also ensure stronger pain management. Personally I take codeine but they can give more stronger than that. You can buy 12.5mg codeine & paracetamol over the counter from Boots nowadays.

Can I make a suggestion that is something I had to do, it's a bit gruesome, but take photographs every time you go to the loo and every time you need to change a pad, of all the blood, and take pics of any clots (I've even picked them back out of the loo), if necessary put a ruler next to it to show the size / dimensions. Because at the present time the NHS is not going to be your friend in my vast experience and you're going to have to get really really pushy and I'm not sure they even believe us about what we're going through. Having photos has helped my case.

Also, in addition to above, IMO yes that size clot is very large and for me about the size of a table tennis ball is as big as the clots get. And they do seem to cause horrific discomfort in the hours before passing but I never know that's what it is.

Just checking in to see how everyone is. Touch wood my pain has been a lot better and associated symptoms. I've been started on Amitriptyline (I'm going to wait until I'm off over Christmas to actually start). I had an mri last week, as they want me to start Prostap again.
I still feel like nobody believes me 😢

Hi despite being on the mini pill for 3 months , the spotting has started again , I’ve got an ultrasound tomorrow to check my ovarian cyst , I’m just fed up of it all at this point .

Toomany. I'm sorry to hear that. It just seems to be hit and miss with tje treatment . Good luck with your scan tomorrow 🙏

I've written extensively on this on another thread but my massive surgery got cancelled on the day, as I was waiting to go down to surgery, due to 'no beds'. I was so shocked and traumatised.

I found out on the day I'm having radical hysterectomy (uterus, fallopian tubes, ovaries, and cervix) removed as well as lymph nodes, scar tissue and adhesions, colon 'patching' or 'resection' (don't even ask) and bladder stents inserted. There might be more on the day once they've gone in. The surgery will take at least 3 - 4 hours.

I'm literally terrified now. Especially about the bladder stets. Might start a thread about that.

Surgery re-booked for Wed 13th Dec. Can't imagine there's going to be any more beds on that day than there was on the Wed 29th but who knows.

Meantime, bizarrely, as of approx 2 weeks ago my constant daily bleeding has more or less stopped (it's been over 17 months now of heavy daily bleeding) and lately I've had a few days with barely even spotting, the horrific abdominal pain that needed codeine every 4 hours has minimised. I'm baffled. So as of the last few days i'm no longer taking mefenamic acid + tranexamic acid + codeine every four to six hours every day. I'm in withdrawal from a year of codeine and feel dreadful.

Hi all. Just found this thread having come to the “women’s health” board to have a moan about my Dr’s surgery.

I’m 53 and was diagnosed with adenomyosis in 2020 after suffering with bloating painful and heavy periods. I opted to take the mini pill at the gynaecologist’s suggestion which has worked relatively well to remove the pain but the IBS symptoms remain and also some urinary symptoms which I didn’t even realise are potentially connected to the adenomyosis until very recently.

I came off the mini pill a couple of months ago because I’d not had a period for some time and thought perhaps I’d gone through the menopause but sadly I then suffered the worst 6 weeks of heavy bleeding and pain and nausea.

So I’m now back on the pill and waiting for everything to settle down again.

But now the pharmacist at my practice will only prescribe a month of the mini pill and the packet I’ve received is due to run out on the 28th December. I’ve asked for another month to see me over the festive period and I’ve been informed that I am not allowed to request the prescription until the 20th Dec. But it can take 3 days for it to get to the pharmacy. Also I am away for an extended period over Christmas and New Year and now I am panicking that if anything goes wrong with the process I am going to start 2024 in pain and bleeding.

Does this narrow timeframe I’ve been given strike anyone else as unreasonable or am I being unreasonable for wanting to be able to guarantee I’m covered for Christmas and NY?

You're not being unreasonable but just to point out - your pharmacist doesn't prescribe any medication, that's your GP's role.

If you ring your GP and explain or send an online request form or an email request, to my mind it would be reasonable and timely to get a further extended prescription sent to the pharmacy. It's not as if the mini-pill is a drug of abuse and it's been working effectively to treat your symptoms so what possible reason would your GP have to withhold or refuse?

Our practice has a pharmacist who apparently deals with all the repeat prescriptions. I’ve been up there 4 times to ask for another month and I received a text from the pharmacist today to say I can’t request anything further until the 20th. I guess I’ll have to book an appointment with a doctor which seems like an incredible waste of time.

Oh I see. Hm sorry to hear this. They can be very 'jobsworth' pharmacists and it's understandable but incredibly frustrating.

I think you're going to have to speak to / see GP. Perhaps you could ask for six months worth as opposed to just one extra month. I'm not sure there's any reason to withhold such a type of med.

I did get the impression they were just being a jobsworth. It must’ve taken them longer to write the text message than it would have taken them to issue me with another prescription. You’re right I should ask for six months. It’s a pain even having to request a new prescription every 3 months. I’m always worried I’ll run out.

Also there's the cost per prescription if you're paying full fee.

My local pharmacy hates doing my repeat prescription so much that they keep trying to engineer arguments with me so they can say I'm not allowed to go there any more.

It's quite laughable if I wasn't so unwell and they are so close to my home. They've stopped doing repeats except on exceptional circs (which I'm on, for now).

Hi - I am 43 and have just found this thread which I'm really grateful for. I had a scan this week and have looked on my nhs app to see that the results show adenomyosis.

I am assuming the gp will contact me in a few weeks to speak to me about it and where to go from here.

I guess I'm glad it's got a name and I'm not going crazy!

Periods every 19 days and last for
7-8 days. Pain keeps me awake at night even with naproxen.

Tranexamic acid and mefanamic acid don't do anything for me. The gp wants me to have a coil but I have been contraception free for 13 years and every time I try to take it I get awful side effects.

I am on sertraline 50mg as my moods were awful during the run up to my period but this has levelled me out and I feel so much better.

I'm looking forward to getting to know you all.

JFT - I'm so sorry to hear that your surgery was cancelled and that you will having to have such extensive surgery. We will all be thinking of you next Wednesday. Keep us updated 🙏
It's so weird when
It's so strange not being in pain when you're used to daily, crohnic pain.
Take care 💕

Hi there. Welcome to the group💕. I'm sorry you are having so many problems with your surgery. I work in the field and that sounds really unreasonable. We usually give a 6 month supply at a time, unless you are due a check and then it is a month until it is done. You can order 14 days before they are due. Pharmacies can now prescribe the pill and do the checks.
I would write another letter explaining that you would like a larger supply and slightly earlier, due to the Christmas period/holiday. Good luck x

Thankfully the pill is free x

Hi there. Welcome to the group 💕
You must be relieved to have answers. It is known as the evil twin of Endometriosis, as they are similar conditions.
I had the coil fitted 18 months ago and it has really helped with the cyclical I rarely bleed at all now. I'm still in pain but I do feel there has been some benefit. I also react to contraception but this hasn't been too bad. X

I relate to your situation - this is how I was (before I got injured in a hysteroscopy last year)

I would never agree to have a mirena coil inserted as a) I had one before that 'migrated' ie went missing and was sticking in the uterine wall and needed special removal following a scan; b) In more recent times I have large fibroids and also polyps - as I said to my GP 'why would you want to go sticking a foreign object in such an already crowded and painful small space; c) I have anxiety x OCD in relation to anything 'inside' me what with previous experience already;

I've been taking oral Provera tablets (synthetic progesterone) that seems to definitely cut down the awfulness. I appreciate you don't want to take any contraception though.

For me the only thing that helped was taking maximum dose tranexamic acid every few hours from the very first sight of blood and not stopping taking it until the cycle was over. Also for pain, I cannot manage without stronger painkiller and although codeine is highly addicting (I vouch for this as am currently in a horrible withdrawl), the over the counter paracetamol and codeiene 12.5mg x 500mg from Boots is effective or even prescription 30mg x 500mg.

Thanks.

I went up to the doctors for the 5th time and the very kind receptionist persisted in making my point with the pharmacist and she's finally sorted me out with a 6 month prescription (I think probably just to get rid of me).

Out of interest do any of you who suffer from bloating find any relief from dietary changes. I've been under the dietician and doing the FODMAP for the last few months but not having much success. I'm guessing that bloating where the primary cause is Adenomyosis is probably not very receptive to dietary change.

I would never agree to have a mirena coil inserted as a) I had one before that 'migrated' ie went missing and was sticking in the uterine wall and needed special removal following a scan; b) In more recent times I have large fibroids and also polyps - as I said to my GP 'why would you want to go sticking a foreign object in such an already crowded and painful small space; c) I have anxiety x OCD in relation to anything 'inside' me what with previous experience already

Even though I've never had a Mirena I really relate to this. When my GP suggested a Mirena coil I very unexpectedly burst into tears. I think she thought I was a bit mad. I can't even deal with a smear test so I think they'd need to put me under to insert it.

Hey everyone. So I finally stopped bleeding and being in daily constant excruciating pain. Ots so nice to just feel normal again. I've started spotting and a few niggley pains but manageable. Anyway I ha e a question.... have any of you had a hysteroscopy and biopsy with no anesthetic? I'm due one tomorrow and dont like the feeling of the local anesthetic. I've heard some horror stories it hurts like hell then others ha e said its just like a smear. Can anyone please tell me what they experienced as I suffer extremely bad anxiety and hospitals or anything medical makes me so much worse x

Hi Vixtar2303

I also suffer with bad anxiety with hospitals and medical treatments.

I had a hysteroscopy in 2020 and I did end up getting booked in for a GA so they could do the biopsies because I was finding the procedure uncomfortable.
But I have a retroverted uterus and I also find smear tests excruciating.

I've also spoken to other women though who have really not been bothered by the procedure at all so I really do think it's different for each individual.

Do you generally find smear tests and transvaginal scans comfortable?

Just checking in to see how everyone is? I've had a virus for nearly 6 weeks and all of my symptoms disappeared. I'm starting to feel better and this week I can feel it ramping up again 🥺
I hope everyone is okay xx