Adonomyosis and gynea referral - advice for the pain

[Ewock]

I've posted in woman's health but putting here for traffic.
After years of being fobbed off with "you have IBS", and by years I mean since I was 17, Ihave finally been taken seriously. To achieve that I had a mini breakdown at my Drs, it wasn't my usual female Dr but a male locum and he was so good. He finally said the words you shouldn't have to live with this pain. I was crying in relief that someone understood and wanted to help.

I know it sounds dramatic but every month I have pain that feels like contractions, some moths vomiting due to the pain. I'm on two different medications for the amount of blood I lose. I have huge clots coming out. I miss at least 2 days due to the pain and flooding. And that doesn't include the pain during ovulation etc.

He sent me for a transvaginal and they diagnosed adonomyosis and also said it had got worse! I asked what she meant, she said my precious scan nearly 10 years ago showed signs of it! I was never told.

So now the Dr has referred me and I've had a letter back I should receive an appointment date by the end of next month.

Sorry it's all a bit muddled but I feel a weight lifted that I'm not making a fuss over nothing, that there is a reason for all of it.

Has anyone else gone through this or have advice on how to manage until I see the gynecologist? I take tranexamic and mefanemic acid, then need to take max dose of paracetamol to get even a small amount of relief.

Same. 17 years of non diagnosis. Crippling pain, hip, back, legs, tiredness,, constipation, anal bleeding before period, sickness, passing out . Did not actually have heavy periods. GP said I had a virus, ibs...no help. Due to digestive issues got referred to gastro.. put on prozac. Totally broke down at gp, sent for ultrasound 4 years ago, diagnosed with adenomyosis..no treatment offered but as perimenopausal said would go after menopause. Went on hrt, came back with a vengeance, further ultrasound, told no record of me having diagnosis and no evidence. 2 years later after insisting fighting, another ultrasound - cysts and very thick uterus. Ref to Consultant... told adenomyosis did not cause pain, despite being prescribed naprixenby previous consultant!) Said cysts were normal at my age but would do biopsy and if non cancerous would discharge back to gp. No one gives a shit, gp no idea what adenomyosis was ..I had to tell her. No further advice or treatment. I am still on hrt ( my menopause symptoms were extreme) should I be???..I'm on evoril conti patches, lots of estranol...Should I be??? Any advice welcome. I'm desperate now, can't walk some days with pain, bloated and bowel pain constipation most days. Sorry for rant !! I'd have a hysterectomy if guaranteed it would improve but feel it may have grown into bowel also?

Progesterone treatments are generally quite helpful alongside anti inflammatory medications as the progesterone starts to work.
The progesterone helps to regulate our oestrogen levels. Higher levels of oestrogen cause adenomyosis and this is what needs to be balanced out and that is what progesterone will do.
In severe cases, pushing for a hysterectomy would be considered an option.

I'm 24 and had always experienced symptoms same as yours and more since my first period (I was 9). I was only diagnosed with endometriosis and PCOS in 2020. I had surgery May last year for it, however it's only a treatment as there is no cure for either of my chronic illnesses. My repeat prescription is co-codamol 15mg/500mg. Tranxemic tablets never helped me, was supposed to lighten my blood flow. I was on the implant to help manage my symptoms at the age of 13 and the pill at the same time and separately, patch as well. I was recommended the coil but I'm trying to conceive and don't trust doctors anyway as my symptoms were terribly worse on taking up their suggestions and for years they ignored my concerns and stated " some women just get bad periods." One tip I do have for you is to never ask a doctor for certain things, you tell them. For the pain I advise you just call your doctors and tell them you want the co-codamol prescription for pain, they can't deny you of this but just word it well. I use it as method to get sleep, I've used it for over 3 yrs now and knocks me out clean for a good sleep when I'm in pain especially when you are already tired. Gives you a small buzz, helps with pain. I purchased a period cramp machine on Amazon for under £30. Massages and provides heat. You wear it like a belt, more practical to use when going outside than carry hot water bottle. Being prescribed paracetamol for your condition is silly and an insult as they know it's extremely painful, it's like offering a plaster on amputated limb but they will always offer low level pain killers as standard for women's health but you have to request for stronger yourself. When you tell them what you want and why, I've always been given just be firm, denying you is classed as medical negligence as they're aware of your symptoms especially after you get diagnosed paracetamol for this type of illness is basically being given sugar. Also probiotics are good to take as well. I'm in pain all day every day, the intensity varies from every time of the day. Heat for me doesn't relieve my pain but it comforts me. Hot baths too. Also keep a record of all phone calls, times, dates, what the conversation was about , who you spoke to etc you will never know if you will need it. Inflammation is what causes your pain, so try making smoothies with anti-inflammatory properties. Unfortunately for us we can only find ways to comfort through pain. Some women are lucky and with the surgery never get pain again. Some women undergo a few surgeries and then they get the happy ending of no more pain. I haven't been lucky so far. Others even with multiple surgeries still in pain. Even removing the uterus doesn't mean you won't have pain. What is your referral to gynaecology for? What are they testing or looking for? Just an update confirmation you do indeed have what you stated? Ask them to check for Endo and PCOS too as in your position it's common to have that. Hopefully you have a better experience dealing with all of this than I have!