Adenomyosis - what’s next?

[abcdefg2020]

I had a laprascopy today to originally look for ‘endometriosis’ but it turned out they saw adhesions on my bowel and some scaring in my stomach (the scarring wasn’t the source of the pain and she thought it was from my last surgery), they also said they saw what appears to be Adenomyosis, she showed me my uterus and it was all grey/white and extremely mottled looking.. she said it’s very strange and looks not normal at all as the uterus is supposed to be a pinky a colour but it literally looked like it had dark grey/white splotches all over it (showed me a photo of it).

the plan she offered was to go on the mirena coil, have it interested during the surgery (which I did), and then if in 4-6 months if my symptoms are not any better then she will start going down the path of a hysterectomy. For a bit of info, I’m 23 years old, 2 children (girl and boy) and I’m sick of the pain all the time and happy with the amount of children I have so for me a hysterectomy is something I’d absolutely be happy with and have been asking for 2ish years :)

does anyone else have any experience with this and what the mottled looking of my uterus could possibly mean? She didn’t 100% diagnose me with adenomyosis but said that’s the path we’re going to if we end up having to treat it with the hysterectomy as they’ll be able to obviously look inside my uterus to see if it is. I was so sad when the words ‘you don’t have any endometriosis’ and nearly balled out crying but I guess this is something and it’s not all in my head…

Endo can be all sorts of colours including dark grey. This can be older lesions and they are called gunpowder burns . It can present very differently in all women and not all gynaes are up to speed when it comes to such issues.

Id be asking for both a second opinion from a gynaecologist re the lap findings and the viability of a hysterectomy if this is what you want. You may also get some resistance re the hysterectomy because of your age.

Further examination of your uterus post hysterectomy would detect adenomyosis if it was there.

Bear in mind that if you have had stomach issues a hysterectomy is not going to address that at all. In the meantime I would keep a daily pain and symptom diary particularly if you do not already do this. You need to see the gynaecologist again and have a detailed discussion as to how to proceed further with treatment and what your options are.

You can start on tranexamic acid to help with the heavy bleeding, it often reduces them a lot and then wait and see how the mirena coil helps as well. It will thin your uterus lining and then reduce the thickness and the bleeding from there. So I'd wait and see across 6-9 months how it works, and perhaps use tranexamic acid whilist it settles occasionally on your period, get it from your GP.

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.

Adenomyosis and endometriosis do look slightly different so they likely would have spotted it. On the stomach issues, I would deal with that through your GP and then depending on further tests, perhaps gastro/upper gastro, depending on what they find etc, if you meet referral threshold for upper gastro etc.

Adenomyosis is typically diagnosed thorough transvaginal ultrasounds or MRIs, or in your case a laparoscopy. However to actually test the cells you would need a hysterectomy, however they will not do a hysterectomy for that reason as you can be 99% sure without it. If you want a hysterectomy separately then that's different but I'd try the mirena first, with tranexamic acid.

There's also the option of an endometrial ablation however that does only help the bleeding with adenomyosis in the same way the mirena does, but it won't necessarily help with pain itself.

Plus endometriosis by definition is tissue similar to the endometrial lining but not the same and it is outside the uterus so could be bowels or ovaries or fallopian tubes, but the one place where it is not is the uterus. So the colours being in your uterus cannot by the definition of endo be endo. Endometriosis and adenomyosis sometimes come together but some people do just have adenomyosis on its own, it's a valid and painful condition but there is treatment available other than a hysterectomy. But if that's what you want you can do that do.

Hi thank you for replying :)

all the medications you’ve mentioned I’ve already tried over the last couple of years on and off contraceptives. I’ve tried the pill, the implant (was allowed the patch due to migraines) and I bled with every single one…

Ive had ultrasounds internal and external and they didn’t see anything which is strange as the saw all that inside x

I 100% want a hysterectomy as I already have 2 children and 1 of each so I’m happy to have it removed if it helps my pain :(

she wasn’t sure what the adhesions/ribbing was but she was sure the colouring to my uterus is adenomyosis x

Such are not readily detected on ultrasound scans. I’ve had more internal scans than I care to mention and none of those detected the endometriosis present. The surest way to diagnose it is via a laparoscopy op.

How have you been left?. Do you have an appointment in three or four months time with a gynaecologist?. You may hit some resistance to a hysterectomy
because of your age, bear this in mind.

A second opinion to a colleague should be sought by this gynaecologist if she is not entirely certain as to what she saw. It’s certainly in your interests to find out what the root cause is for you to be able to make informed treatment decisions with the gynae. It is vitally important that you and she can work together here.

I didn't mention the implant, have you tried any NSAIDs? If so which ones? NSAID can be used for the few days up until and during your period for any pain etc. Though you should be using it right with food and omeprazole, and before the pain starts as well.

If tranexamic acid hasn't worked you can try northisterone - bear in mind this should be a the coil settles hopefully very well and for occasional use on your periods. I agree the colouring is adenomyosis, what previous surgeries have you had? If the adhesions are on your stomach, I'd go back to GP for that, likely an endoscopy to see into the upper GI tract as well. Then from there deal with that separately to the adenomyosis.

I think you are unlikely to get a hysterectomy without trying the mirena for 6 months-9months. However as you already have it in, by the time you get the hysterectomy if you do it likely would have been that long and if you are happy with it, then you can change your mind or convert the op into an endometrial ablation, which can be great for many or go ahead with the hysterectomy. But you'd need to have a conversation with them around whether they took your ovaries and/or cervix too, as then you'd be into surgical menopause and need to start HRT.

I was saying adenomyosis btw is regularly detected on ultrasounds and MRIs, not endo, but if they looked that far across your stomach etc they likely would have seen endo if it was there. Ultrasounds are sort of 50-50 on whether they'll spot adenomyosis but MRIs do very frequently, they'll always be some people for who it doesn't, but for adenomyosis this is a relatively small number. Different for endometriosis btw.

There was likely at least one other surgeon in there, a registrar most likely who also will have had training etc on recognition and since they have more exams etc will have also been up to date with more recent research etc. They may have even had more surgeons in there but sometimes they don't always meet you or tell you that, so I'd ask about that and ask if so what they also thought.

OP

You certainly need a follow up appointment with the gynaecologist in a couple of months time and this should have already been arranged by them. Sometimes but not always there are other surgeons in theatre but if this gynae was not 100% certain a second opinion should be sought by her. You also do not want any more surgery than is absolutely necessary.

Was this surgery performed under the NHS?.

Hi the surgery was done under the NHS, and I’ve been left quite confused. I’ve requested the notes from the surgery and the photos to be able to speak to either a specialist or another gynea doctor

If you have the NHS app after they finish the notes and the report, they'll send it to the GP who will scan it in. It takes a few weeks though, as the secretaries write it up from the surgeons dictations, they record it, so if they have lots to do it can take 6+ weeks.

Was the gyne doctor a registrar or a consultant? I'd also ask if there was multiple surgeons or any other surgeons, and what they thought. Anything they saw etc. There isn't really another speciality to speak to, you would need a referral from GP, so if you want to see upper GI, then ask your GP for an endoscopy, explain what the gynaecologist found from the surgery with the stomach adhesions and then they can take it from there with further tests etc and also endoscopy.

There aren't really adenomyosis specialists with gyne. Across OBGYN, the main sub-specialisms are in uro-gyne, maternal fetal med, then like gyne cancers, also endo. Typically if its an endometriosis specialist they will know a lot about adenomyosis as well. Are you in a BGSE center? https://www.bsge.org.uk/centre/page/4/
You can use this to check? It's not always necessary but if you are already with gyne and want further specialisms that's probably the only way to go.

I’ve already have an endoscopy and an EUS as well, everything was fine and no issues in that area:)

ill speak to my GP at some point this week and hopefully try speak to another doctor within the department. I hope the Coil works, if not I’m happy to go through with the hysterectomy like the doctor mentioned :) the surgeon was a consultant that did the actual surgery

Do you actually have any symptoms or issues with your bowels, upper GI tract etc? Anything disrupting your life, nauesa, vomiting, pain etc? If not then I'd leave that, watch it but other than removing them, there's not exactly anything to be done. If you did have a hysterectomy you could talk about perhaps getting general surgery to remove them but it can be complicated etc, if they say its medically unnecessary.

I'd wait on the coil etc, it can take up to 9 months, but for most will settle before the 6 month mark. Whilst it's settling I'd ask for some northisterone to use for periods. For your pain, perhaps try another NSAID, or the same one with a higher dose, make sure you take it consistently, a few days before the pain starts, with food and omeprazole as well.

Then if it really isn't working it's either ablation which is an amazing option for many with bleeding etc, and somewhat for pain or a hysterectomy.

Have you actually gotten an appointment with a doctor in the gyne department this week? As otherwise over the phone or just asking, they won't have time, with outpatients, doing surgery, on-call with inpatients. The best you could likely do is speak to the secretary and get an outpatient appointment booked in - I'd get it for 5-7ish months time because you want to see how the coil is going, if you have it too soon, they may 1. Discharge you from their service and say get a new GP referral if it fails or 2. Say that it's too early to tell and not book anything in.

You could also ask the secretary if you can have a call with one of the endo nurses as they tend to know lots about adenomyosis as well and would be more likely to get that unscheduled.

Also ask the secretary about waiting times for letters and surgical reports, they can be quite long, ask about the earliest you/your GP can get them, so you have a timeliness for seeing them on the app etc. Also ask how many surgeons were involved in the surgery, you could ask endo nurse if she knows if there was any other surgeons and if so if they thought differently or the same etc.

If you do manage to talk to a registrar or consultant or nurse, I'd ask about if you do go down the hysterectomy route, whether they think a total one with removal of ovaries or cervix is a good idea or not. If so, think about HRT etc and surgical menopause which can be a lot. If you do go down that route, I'd lean towards just removal of uterus but it's up to you.

Definitely see your GP though and make a plan, then check in via econsult or online form when the reports from surgery get sent to GP.

I have a mirena for adenomyosis and endometriosis and it’s been really good

I had adenomyosis for decades seemingly, having had crippling period pain all that time, before I got a chance diagnosis by a gynae consultant who I was seeing about something else. He fitted the Mirena and it worked wonders. I’m post menopause now, but I recall the pain disappearing and I could function normally. Best of luck OP.

The doctor put me on that notherison (if that’s how you spell it?) and it just caused stomachs cramps and I felt so emotional :) I kinda wanted to keep away from any hormonal contraceptives as I have BPD and they can really effect my emotional health but I said yes because I didn’t want to seem like ‘I was co operating’ so I do reckon I’ll wait however long she said and then speak to her if it doesn’t get better.

in the mean time I have emailed the hospital and asked for the surgical notes and I’ll contact them next week to hopefully get a second opinion of some sort, not that I don’t trust the consultant at all however if she’s not sure what it was then maybe one of the other doctors may have like an idea?..

fingers crossed the coil works as I’ve spent 10+ years in pain, trialling all these different medications for my pain and also contraceptives to help my periods and mid cycle pain as it’s not just on my period these pains and throughout my whole menstrual cycle x

That's obviously your decision, you could use tranexamic in the mean time when necessary so not consistently but as the mirena settles when you have occasional heavy bleeding or northisterone but again short doses for a few days whilist the coil gets into gear, hopefully its pretty quick for you. You don't necessarily need to do it now but something to keep in mind and get from the GP if you think you need it. Obviously it's hard to say it was exactly the med that made you more emotional, if you already have mental health conditions and it's not a controlled trial etc obviously.

We're you taking the northisterone properly? As in after you'd eaten etc? That makes a difference to the stomach issues. It's hard to get a second opinion on the NHS, especially since you've just had surgery, I'd ask if there was anyone else in the surgery who took a look and then what they thought. It's unlikely they'll put you back on the list just for a second opinion for a while, looking at the waiting lists etc it won't be high priority.

Who did you email? The ward or your consultants secretary? I'd see about having a call with the endo nurse about adenomyosis etc as like I said highly unlikely you'll be able to speak whether by phone or in-person to a consultant or registrar during the week, unscheduled as they'll have inpatients, outpatients scheduled, surgery etc and so if you do have the consultants secretary's email, ask her if you can have a follow up appointment in 4-7 months.

Sorry as you haven't said, other than trying the pill, implant etc, what specific medications have you tried? And for how long etc? How effective were they? It does matter in terms of figuring out longer term treatment plans and other meds you can try to help.
Do you actually have any symptoms from your bowels, upper GI tract, upper part of your abdomen? Anything disrupting your life, vomiting, pain?

They should have made a follow up appointment a couple of weeks post lap to discuss the findings with you.

It may be an idea to calls PALS in the hospital you were seen in as they can also liaise with doctors.

Hey @abcdefg2020 sending lots of sympathy.
i have both endometriosis and adenomyosis and was chronically anemic and in terrible pain.
In May I had the Mirena inserted on the advice of my gynaecologist. I didn’t really want it but he said it’s this or a hysterectomy.

Month of June was not great as I had really annoying spotting/bleeding every day.
But!!!
I haven’t had any period or bleeding at all since then. I feel like a new woman, it’s almost miraculous. Fingers crossed the Mirena works for you too.

I had the coil fitted maybe 4 cycles ago? For diagnosed adenomyosis. My (limited) understanding, is that it is similar to endo, but just in your uterus. rather than widespread.

The coil has honestly changed my life! My periods are still there, but 4 cycles on are nowhere near as painful, much lighter and the last one lasted less time than typical!

It did take a while to settle and at first I thought it wasn’t going to work. But honestly, being able to trust sanitary products and not have to worry about pain, no more clots! It’s insane!

I hope you have the same results!

I have adenomyosis and had the mirena coil fitted last Tuesday, so early days! I’m also perimenopausal so the coil was recommended for the adenomyosis and to assist with peri symptoms. I am having a bit of bloody discharge and spotting but that’s to be expected.

To add, I never got on with the pill but the coil seems fine so far. I have the odd day of spotting but no periods

morning :) been a few days since I posted, really struggling with recovery. I’m not feeling well tbh, massive headache and just achey all over. Idk what’s normal and what I should’ve expected as my period was due 2 days past the surgery and I am bleeding now but I had the coil put in so I just don’t know what’s normal. They didn’t send me home with any pain killers and didn’t even tell me like the basic and how long it would be before I started feeling a little better cos I really don’t feel great physically

It's likely more of the anaesthetic and the surgery having that impact than the coil, but the coil adds some more for your body to adapt to.

They don't give painkillers with surgery as a blanket thing unless it's more complex like transplants, lots of excision, etc. But a laparoscopy is less complex, so they try and avoid it, addition, etc. Do you paracetamol and ibuprofen if you need it and also rest a lot. People are different, so even though recovery is 2ish weeks, others are longer, plus it doesn't help when you already have chronic conditions, etc. Pace a lot as well, spread things out and under do it, don't overdo.

If you have any questions or want to get in touch with them, call the ward or email the consultants receptionist or endometriosis nurse - they often know a lot about adenomyosis as well. Or see your GP because they can help if recovery is a lot.
They like the trandelaburg position and the reverse trandelaburg, so sometimes gas gets a little trapped, and that's also uncomfortable after. Also going across that much of your stomach is likely meaning it was more extensive than normal. Plus periods don't help so try and rest, use meds and hot water bottle etc. If it continues this week, see your GP as that's too persistent. I hope you start feeling better soon x

Is it normal for my stomach to still be a bit hard after a couple of days ? It’s been 4 days and it feels hard and not soft like it usually does :( I’m really hot and flushed as well, keep getting super super overheated warn. Is this anything to worry about do you think?

Have you taken any medication?

I'd call the ward, they normally say to direct post-surgery queries to them, then theyll say whether to come back in, or go to A&E. It can be quicker if they say to come in, as you can bypass inital triage.

I think you should call the ward, ask to speak to any nurse or the endometriosis nurse - they often know a lot about adenomyosis as well. Let them know your stomach is hard and any other general symptoms. See what they say and go from there. The number is likely in any emails they've sent you etc. Or any letters they've sent or on the NHS app if you can look at the letters from there. Or the website.