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.

I'm sorry you're going through pain with your periods. But it's great you're seeing a gynaecologist soon to discuss your options.

Was your adenomyosis purely diagnosed via a transvaginal ultrasound?

You mention you had CIN3 three years ago, have you had a cervical screen test since?

I know people who have had adenomyosis. They went on the mini pill (but it didn't work for her). Another friend went on the mirena coil and also took HRT. Bleeding and pain is better. Hysterectomy is another option.

Might sound silly but there's a fab community of women on Tiktok discussing adenomyosis. I had no idea about it until I saw videos on there, and it led to my diagnosis. If you need some community and solidarity, have a look

Thankyou for both your replies :)
@Seekinginfolady
@DazedAndConfused321
yes I had a transsvaginal ultrasound

I had the CIN3 cells removed then a smear a few weeks after and had the all clear. Im due my next one this September.
@Seekinginfoladythe her was that for the adenmyosis or was she going through menopause?

im not on tik tok but it may be worth making a account to look at these things

They had adenomyosis.

Was your ultrasound carried out by a gynaecologist? Did they/another doctor also do an internal examination to check for cervical polyps, cervical ectropion etc?

Are you also at an age where you are going through perimenopause? Post menopause, things apparently get a lot better.

I have adenomyosis. It got much worse recently and the bleeding and clots were making life increasingly difficult as I couldn’t go for more than 20 minutes without flooding, despite industrial levels of protection. I was also dangerously anaemic.

I’ve had a Mirena coil fitted and it’s been life changing for me.

I have this. Gynae basically offered me, in order of their preference 1) Mirena 2) hysterectomy 3) continuous HRT to lessen bleeding 4) drugs that put you into menopause 5) suffer till menopause.

I'm nearly 50 so I went for option 3 which has helped and is the least invasive. That probably wouldn't be an option at your age and the equivalent would probably be the pill without breaks. Basically there is no treatment that doesn't have side effects or risks. They don't take it very seriously because, hey, it's only pain, right?

I buy prescription strength iron and have been taking it for 18 months and finally have my ferritin in the normal range, but only just. The doctor stopped prescribing it the second the bloods were normal, despite the ongoing condition. I understand that, but it's a failure to see the bigger picture of long term health and I've had to work that out for myself with no advice. In fact, it was on mumsnet that I learnt you could buy that strength of ferrous fumerate over the counter.

my scan was performed at a women’s health clinic my gp referred me to I’ve now been referred to gynecologist by my gp. I’ve also had an internal examination. She said she couldn’t see any ectropions. Also no fibroids no cysts. I’m 33 now and done having children .

I find it strange how normally people bleed heavily but I am the opposite, but I have horrendous pain and pass large clots without bleeding heavy.

@TreesWelliesKneesthis is my worry. I think I will be brushed off because I’m a woman and like you say, it’s only right !

I won’t let them force me into contraception. It changes me into a monster. Judging by Google and some comments on here I may have to ask about a hysterectomy. But I know they will probably say no to that. Even though I’m done having children and this every month is controlling my life

@bagheera92 I have this - the mirena has reduced by bleeding but not by loads. Yes, they treat the real cause as well (mirena will may the uterus lining thinner, less bleeding and less cramps). Sometimes people also use antidepressants at the same time, which stops the side effects you've previously had or reduces them. Again HRT can be good (maybe just estorgen).

Also ask your GP for mefenamic acid and/or naproxen (NSAIDs which help a lot) and tranexamic acid (helps reduce heavy bleeding) - you need to start taking it days before your period starts so that it can work at best capacity. The same with ibuprofen and/or paracetamol. Start taking it 3/4 days before and it will be much better. I would get on an NSAID and Tranexamic acid as well. Also if you suffer with nauesa and vomiting during your period get antiemetics (antisickness) tablets - you may have to try a few different ones but now I'm settlwd with one its so helpful.

Also ask for opiods (Co-codamol) for your period can be helpful.
The links below have much more detailed and useful information

https://www.nhs.uk/conditions/adenomyosis/

Hi , hope you’re all well!
I now have an app with Gynea at the end of October.
still unable to take NSAIDS due to severe IBS and not taking contraception due to reasons listed above.

the last 2 months I have been really poorly with my periods, I’m now passing clots the size of my fingers and can’t move from a hunched over position with pain. Last month I couldn’t pee properly for the pressure. And when I would try to sit down it felt like I had a ballon inside me.

also smear in September came back all clear !

I had a colonoscopy last week due to my severe bowel symptoms. I’m now wondering if the adenmyosis could be affecting my Bowels.

I was diagnosed with endo and adnenomyosis about 13 years ago in my early thirties. The pain was horrific for 2 weeks every month from day 1 of bleeding until, presumably ovulation. I tried the pill (caused migraines), an induced menopause and synthetic HRT (awful and caused horrific bone pain).
I finally had a laparoscopy and they removed the adhesions caused by the endo and had a mirena coil fitted at the same time.

The mirena stopped my periods entirely and I was gradually able to heal from the internal scarring the endo had caused.
Please please push for them to do a laparoscopy to see if you also have endo, I never had heavy periods either, but I had agonising pain like I was being ripped apart every single month.

I get that contraception has not been good for you, but the mirena is very different in how it releases the hormones, it may be worth a try? However if it not for you, push for a hysterectomy, but consider that you will also need synthetic HRT at your age which may also give you side effects similar to contraception?

Finally, and I hate to say this, the only reason they took me seriously wasn't because of the pain, but because I told them it was impacting on my sex life!!

The aged 60+ male gynae consultant was horrified and actually said something along the lines of "your poor husband, we can't be having that, lets get you sorted"
Arghhh!!!

@Endoadnowarriorthankyou for your reply. Ile be honest , the pain is worse then when I miscarried our second baby. I could still function with that pain. But this … this floors me. I can only compare it to be induced on the hormone drip !
I have had the coil and unfortunately it twisted and I had to have it removed it’s really traumatized me. With my misscarriage I also had to have 3 surgery’s as I couldn’t pass everything. Then also having CIN3 removed just sort of topped me off not wanting anything else put in my body. So the thought of having another coil in there ….

well that’s the thing .. my husband has a restaurant. He’s having to take a week off nearly every month because I can’t function. We are losing so much money.
I know if I have a hysterectomy he will need to look after the kids but at least we will have notice and that will be planned so he can ask his parents to work for him.
I can’t sit in the car to drive to collect the kids from school because my vagina and bottom are so tender. I also have pain in my vaginal canal.

from what I can gather from the report of my scan ultrasound they are saying the adenmyosis isn’t that bad. But this level of pain and clots doesn’t match the none severity of the adenmyosis.
This is what was said I will copy and paste
“Uterus - Anteverted uterus measures 72 x34 x44mm in diameter. Some suggestion of adenomyosis With hyperechoic foci in the myometrial/endometrial interface as well as A striated Shadowing seen from the anterior myometrium.
Endometrium - 9 mm”

I will definitely push for a MRI or laparoscopy.
can I ask please, did you pass clots?
each month mine are getting bigger bigger.

another thing, I also now bleed after sex. I never used to. It’s nothing vigorous either! Just gentle because it hurts doing anything more than that. My GP actually wrote to gynea because she’s concerned about the size of the clots and that I’m now bleeding after sex. She requested Gynea step up my referral as urgent and they refused saying I should remain routine.

Yeah I did have some clots too.
Completely hear you with not wanting to have anything inserted again!
My last 2 coils needed replacing as they were too low... I also have an anteverted uterus and also a tilted cervix so difficult for them to site it very easily.

I had my latest one replaced this year at the hospital via a hysteroscopy as it had become embedded in the back of my uterus! Arghhh
The good thing is that they are now licensed for contraception for 8 years so I am hoping as ill be 54 that by the time it needs to be removed that ill have gone through menopause naturally and have avoided a hysterectomy.

Ive been reluctant to consider a hysterectomy due to my experience on the synthetic HRT and risk of further abdominal cavity scar tissue.

Why is it so bloody hard (pardon the pun!) It seems like whatever option you "choose " there is a payoff of enduring some other awfulness. :-(

Is going privately an option to be seen sooner?

@Endoadnowarriorits good to speak to someone who feels the same about the coil. I get fed up of contraception being pushed. My husband suggested the implant. And I said to him “remember how suicidal I was for 4 years trying all the pills patches etc? If I get the implant in you can’t just get it out it’s not as easy as that”

im done having babies and frankly done with having a womb 😂I’ve also had pcos for many years diagnosed via scan and bloods.
yes it’s no win isn’t it.

I would absolutely go private in a heartbeat but we don’t have that money. I could stretch to a mri privately. I did read that gynea may suggest a mri.

in terrified for the app with them incase they refuse to help me because I won’t go on contraception

@bagheera92
I hear you!

Refusing due to impact on your MH is perfectly valid, they wouldn't let me go back on the pill because of migraines, so why on earth they'd try to insist when mh is so important is beyond me...but I know they do !

Dont be railroaded into anything! Would your husband be able to go to the appointment with you, if he would be able to support you to articulate why contraception is not viable?Failing that, a trusted friend or family member? These appointments can be so awful alone, we are often are at our most vulnerable and it can be overwhelming and emotional. I wish I'd known more/been stronger 13 years ago but it was so exhausting just existing with the pain that i didn't have the fight in me.

I'd say to save your money, no point paying for an earlier MRI if there is noone who is going to look at it any sooner.

I really hope you aren't waiting too long to be seen. I'd suggest going back to the GP every single month tbh for support and keep asking them to push and push. Another option for pain relief could be pregablin/gabapentin and/or duloxetine/amitryptiline as they work by altering the pain signals to the brain.

I didn't tolerate gabapentin or pregablin very well unfortunately, but duloxetine helped and I still take it now..

OP

I am wondering if endometriosis is the cause of your bleeding and pain. Both this and adenomyosis can coexist. This does not readily get seen on ultrasound scan and endo can also get onto the bowels causing havoc there too. Painful sex is a main indicator of endometriosis potentially being present. It’s usually diagnosed via laparoscopy. Do not be fobbed off.

I realise that finances are an issue but I would use the money for a MRI scan to pay for an initial consultation at a private hospital with a gynaecology clinic. See if there is a local Spire or Nuffield near you.

That has crossed my mind to could it also be edemetriosis. I read that adenmyosis doesn’t cause bleeding after sex.

yes we have the spire and Nuffield here. However if I go private for a consultation with a gynecologist, i can’t then continue care with the NHS. I would need to be re referred and start this whole process again to go back under NHS care :(

I suggest going private also because nhs waiting lists for gynaecology in many areas are miles long.

Do you have any idea of when you will be seen by a gynaecologist in the nhs?

I would keep in touch with your gp monthly and keep this person informed.

I’m at gynea this month , I’ve been on the waiting list from July . My GP did refer me as urgent but it was knocked back and triaged as routine.

So I had a phone call this morning asking me to come in today rather then later in the month. The gyneacologist was lovely.
she went through medical history
childbirth history
contraceptive history
cycle history and symptoms.

i explained to her how much pain im in, showed her pictures of the clots in passing. She totally respected I didn’t want any hormones in my system or a coil.
she does think I have endemetriosis aswell as adenmyosis.
and then she told me the best option would be for a ablation. And she thinks this is the best option because my husband has been snipped and if I have this surgery it’s very dangerous to fall pregnant after.
she did say though it will help with bleeding, but wether it will help with pain varies from person to person.
so it’s a bit of a gamble….
i said don’t you want to do a mri scan for endometriosis and the adenmyosis ? She said “no I think we have messed around enough and this is severe bleeding with the size of the clots your passing”

she also said she wants to take biopsies of my womb, but that would normally be done awake under hysteroscopy?(sorry I can’t remember the exact name for it). Because of my trauma from past surgery she would do the biopsies at the same time as the ablation to save any further trauma. And while in there they can have a good look at everything and see if there’s been any damage done by the surgeries in the past.

I also asked about a hysterectomy, and for this condition she explained having my womb out wouldn’t stop the pain. As it’s the hormone released from the ovaries causing the pain. And at 33 they wouldn’t consider removing my ovaries because I would need to be on HRT until I’m 50 which can be dangerous.
she told me to come home have a think don’t make any snap decisions. I did appreciate her explaing everything rather then just saying “no”.

so if anyone has had a ablation I would be grateful for your advice and experience 😊

Hey OP, I know this is an old thread but I wanted to ask how you are?

Your symptoms are very indicative of endo as well as adeno.

I have both, with very similar symptoms. I also cannot tolerate birth control/hormones.

Please don't have ablation surgery - endo needs to be excised. That will help the endo. The only cure for adeno is a hysterectomy.

Despite me trying several pills and having ablation during a laporoscopy in 2020, my pain has only increased. Only now do I know that ablation is not the right method to treat endo.

The NHS are insisting on only more hormonal therapy, so I had no choice but to find a private specialist. I'm having a full hysterecomy (but keeping my ovaries) and endo excision surgery.

Hello! Sorry I just seen your reply !!
Since my last message I’ve got worse pain wise. To the point I’m on the floor mooing like a cow when I’m due on and bleeding. The only relief I get is with codeine and sitting on the toilet pushing as if I’m giving birth.
pain after sex has got worse, pain and pressure when urinating worse. I have some severe bowel symptoms which have have been investigated thoroughly … Gastro said it could be gynea related.

I called Gynea 3 weeks ago and asked if I could have a mri to check for endo. The secretary called me back and said I’m on the waiting list for a pelvic ultrasound, I said well why I’ve had one and was diagnosed with adenmyosis?.
she said oh let me go back to the consultant and tell her…
I got a phone call back again, saying consultant said you don’t need a scan as the ablation will treat endo aswell as adenmyosis if you have endo also…
I was a bit “hmm”. I explained to the secretary that may be correct, but I would like to know what is going on with my body. So she said she’s booked me in for the 26th for a telephone appointment with the consultant, which is tomorrow. I’m going to have to argue for a scan..

at the end of the day it’s my body, I’ve been through so much gynea wise since starting my periods at 9 I’ve just had enough now. AND to just put the icing on the cake I also think I may be in perimenopause even though I’m 34.. I’m having bad hot flushes that start in my face and spread to ears.
my sex drive is through the floor
the week before during and after I bleed I am so low, flat and depressed.
patches of dry sore skin all over my face when I finish bleeding
and the rage I get literally comes from my toes ! Not just a little bit angry. I’m talking where I have to leave the room if the tv is to loud 😂

i agree with you though the NHS try to push hormonal treatment. I won’t be going on that, I’ve been close with them.

How are you getting on OP?

Ive just come across your post whilst sat googling my options before I head into a gynae appointment.

Ive got adeno and ovarian cysts which have largely been asymptomatic, but have been in excruciating pain the last few days so worried about the next steps

Hello! I’ve been quite poorly the last 4 days passing clots every couple hours the size of my palm and when I’m standing up I can feel the blood streaming. And the pain is like nothing I’ve ever experienced. Stabbing pain in my lower right side . Throbbing behind my pubic bone and in my vaginal canal. my bleedding has eased up to spotting today, and the pain has also eased I just have a severe headache and feel exhausted.
at my app on the 26th she said she would like to do a laparoscopy to check for endo along with adenmyosis I am already diagnosed with. And if they find endo they can do minor treatment there and then.
she has also prescribed me the patch and a tablet for my peri / pmdd symptoms which my GP is refusing to prescribe, so there’s another battle! .

Yikes! Sounds like youre really going through it

Hope you feel better soon and that the interventions work

@ShouldIStaySelfIsolatedhow did your appointment go?