I’ve just been diagnosed with adenmyosis…

[bagheera92]

I would really like to read anyone’s experience with this diagnosis and their experiences they’ve had from gyneacologists within the NHS. And what treatment you’ve had for it. I’m at rock bottom with the pain every month and the extreme pmt. I’m not sure if the pmt is related to the adenmyosis though.

For the last 3 years my periods have changed.
I used to be very heavy and quite irregular.
Not much pain. Bleeding around 5-6 days.

But the last 3 years they have became very very light and regular every month. To the point I barely bleed I just pass large fleshy clots for a day or 2 max then I’m done.
But the pain is horrendous like I’m in labour.
I have to sit on the toilet and strain as if I’m pushing to get any relief, codeine doesn’t touch the sides .
I bleed after sex and have pink discharge inbetween periods.
Sex is painful. The pain is deep in my pelvis behind my public bone and orgasms make it even more painful !!
My moods for 2 weeks of the month are awful I swing from wanting to conquer the world to wanting fight the world. I’m not taking about getting angry I’m taking pure rage! Which is not like me. I have depression and severe anxiety but not anger issues.
I went to the gp thinking maybe I’m
hitting peri. I’m 33. Bloods were done, they were all fine.
I had a scan which showed adenmyosis. I’ve read that adenmyosis normally causes heavy long bleeding but I’m the opposite.

The gp tried to get me onto contraception to help the adenmyosis which I refused.
I had the copper coil it moved twice .
And hormonal contraception makes me suicidal (I already have mental health problems and hormonal contraception makes me 100x worse to the point I’m suicidal).
I’m allergic to the patch also.
So she has referred me to gynea.
I’ve also had CIN3 removed 3 years ago.

I have no idea what gynea may say or suggest but I know I won’t be pushed into hormonal contraception. My husband had a vasectomy as we don’t want anymore children and because I can’t tolerate contraception.

There is no treatment for adenomyosis, except hysterectomy. It's awful that you're being told incorrect information, I'm really sorry you're struggling.

I had a full hysterectomy (kept ovaries) 2 days ago and feel better already. My uterus was enlarged, inflamed and had large fibroids attached as well as adenomyosis.

I had three large areas of endometriosis.

For anyone else reading - my adeno, endo and fibroids were not picked up by ultrasounds. The adeno was diagnosed by MRI.

I had to go private in the end as the NHS just wanted me to have the coil. I do badly with any hormones so they refused to help further.

2 days post op and I'm already in less pain than I would have been! Best decision ever. Good luck to everyone dealing with being gaslit, dismissed and treated like you're a hindrance. Don't give up.

Just a little up date , my consultant asked for a up to date scan before my surgery. (Got to bottom of why she requested that and not a mri)
she also prescribed me patches to wear 24/7 and a tablet to take on day 17 of my cycle (can’t remember the name of the tablet)
scan showe an irregular endometrium. And possibly polyps.
im booked in for June now for my surgery.

surgery wise that has been changed. I’m still having the ablation to help with bleeding from the adenmyosis.
laproscopy to check for endo and she said she will treat that if they find any.
I’m also having biopsies and hysteroscopy.
and she will take out the polyp if she can see it.

in the meantime she said to stop taking the patches and hormones

Sorry to hear you have been struggling with such extreme pain, that's good you are having surgery in June. I have endo and adeno and after a recent hospital stay due to pain, my surgery has been brought forward to later this month. I am having excision and hysterectomy. I really hope it brings you relief and more answers.

@Clemiltoniahiw are you feeling about your surgery approaching ?
I have asked for a hysterectomy. I said I’m not having anymore babies, I’ve already had CIN3 removed. Now all these gynea problems why can’t we just cut it all out?
and she said the condition I have is basically made by the hormones the ovaries release. The only way to cure me totally is remove ovaries aswell as my womb. And at 33 (I started my periods when I just turned 9) that would be quite dangerous on my heart and bones.
I respect her for expanding that to me and not just saying “no”
and the fact she listened straight away about my peri symptoms and helped me straightaway.
I’ve been going to the GP since I was 30 and been told this is all in my head it’s anxiety etc .

I have had 2 consultants disagree over whether or not to remove the ovaries but I have decided to keep them. It was a very difficult decision as I know they can continue to feed the endo but most recent consultant said to remove them now could cause problems with bone density and I could end up needing a hip replacement by the time I am 50! I am older than you at 40 but no peri symptoms yet. I am relieved to be getting womb removed to get some relief from extreme bloating! It's great you have a consultant who is on your side and explaining everything so well. Sorry you weren't believed by GP, its just awful the number of similar stories your hear. I hope things will start to improve for women's health.
Are they doing an ablation and excision for you? I really hope that helps 🙏

@Clemiltoniawell thats it isn’t it. Weighing up what is best for you in the long term and what YOU believe is best for you.
I hope you bounce back from your surgery and have some support at home.
yes ablation for the bleeding. Cut out the endo if they find any, by laproscopy. I will be shocked if they don’t !
I thought the up to date ultrasound would show a cyst on my right ovary to be honest. I get a lot of pain the tugging , like a zapping pain also. It comes and goes. But when I go to the loo for a poo and strain (tmi sorry!) the pain in my ride side over ny right ovary is horrendous . And when I pee also.
then after a bowel movement the aching in my pelvis has me doubled over. I’ve had extensive investigation by Gastro and they have found nothing.

so when my consultant told me my endometrium was irregular I was shocked ! She said though, endo doesn’t show on ultrasounds so they may find some there where the pan is when they do the laproscopy.

I hope the ablation brings you some relief. I have the same symptoms you describe and was originally sent for a colonoscopy which was clear but then the MRI showed endo on bowel, ureteras etc. I am going to have a bowel shave and removal from other organs too. I wonder if that is what is causing these symptoms for you as well. The laparoscopy will let them fully investigate it for you.

@Clemiltoniathat is really interesting to know. I had 2 colonoscopy’s. Up and down cameras. Not a thing, I have chronic constipation also no matter how much water I drink how much fiber I eat. Hence why I have to straight and end up in agony.
how was you recovery from the laproscopy ?

I think unless the endo has broken through the bowel, the colonoscopy probably won't pick it up. I have never had a laparoscopy, I was diagnosed by scan and MRI and cause they could see it was advanced, I am just going straight for the surgery. I'm sorry the constipation is giving you so much pain, it really sounds awful and its terrible that nothing is alleviating it.
Feel free to private message me if you want to discuss more, sounds like we will be having surgery quite close together!