How difficult is it to diagnose Adenomyosis?

[Jennyjenjen01]

Hello, I hope you are all well and surviving the heatwave!

Long story, but for 6+ years I have been experiencing worsening gynaecological pain. This started during ovulation and was a fullness within the pelvis and sharp pains within the rectum and to the lower right of my back/abdomen.

Gynae referred me to the endometriosis team, where i was told i was too overweight for a Lap so was given the Mirena coil and reviewed for a few years. After becoming sick of this routine, i paid for a gastric bypass to lose weight. Ultimately, I had an MRI in May 2021 which showed some ? possible endometriosis scarring on one of my ovaries and behind the uterus. I had the Laparoscopy in December 2021 which was negative. (other than some cervical erosion apparently)

Due to cancellations, I had to wait 6-7 months for my follow up which took place last week. (During this time, i had a colonoscopy to rule out any bowel issues - this was normal). After months of worsening further pain and symptoms, the Clinical Fellow told me that i do not have Endometriosis and therefore i was being discharged from the service and referred to the pain team. She then asked me what significant events occurred in my life at the time of my symptoms starting and (of course i knew where this was going so) i started to cry. I already feel like i am going crazy because i have had years of not being listened to and this clinician wants to take her hand at counselling me; eventually coming to the conclusion that i need psychosexual counselling and investigating for fibromyalgia.

This has been a really tough time for me, the past few months i have bled every 2 weeks and experience the same sharp stabbing pains in my pelvis and to the lower right (where i am assuming the ovary sits). The GP has prescribed Gabapentin and i take this alongside co-codamol. Intercourse always ends up with me being in pain so this part of my relationship has been affected massively.

I do notice however that my uterus is now very low, when i am experiencing pain most it is literally about 1cm from the vaginal opening. I Cannot use tampons at all and it becomes uncomfortable to sit down when i am ovulating or just before I bleed. It occurred to me that throughout this, besides the Lap, i have not been physically examined for around 5 years...

Anyway now i have that off my chest... i think my symptoms sound like Adenomyosis ? Im not sure where to turn to anymore.

Thank you in advance for your patience and replies <3

[bluebug]

I had an transvaginal ultrasound when I was on the last couple of days on my period. So it was noticed that my uterus was too thick for that time in my cycle. However they weren't interested in looking for it until I was over 40...

[Jennyjenjen01 in reply to bluebug]

I hate how dismissive some professionals can be. Did you have symptoms for some time before? Are you under treatment or did you have a hysterectomy?

Thank you for replying

[Avourneen]

Hi Jennyjenjen,

I'm so saddened to hear this. I absolutely hate it when medical professionals start this rediculous pushing of the idea that any problems they have not been competant enough to understand are therefore all in your mind.

I think this was all started by one idot who wrote a book on back pain all being caused by hidden trauma. It is just complete bull and really offensive too. The book has long been debunked and shown up for having no medical basis but it's incerdible how many GPS have read this type of rubbish and take it seriously. I think it is because it is convenient get out for them to excuse their lack of skill in diagnosing illness.

I really feel for you it is so insulting and belittleing to deny that what you are suffering is real and basically suggest you are imagining the problem.

Do not let them shake your belief in yourself, you know your body much better than the doctor does.if any doctor does this to you never see that doctor again, they are not a professional. A good doctor will always listen to the patient and will try to help them. YOu can get help but you must push really hard and refuse to be fobbed off like this.

There are lots of mistakes in how these doctors have looked after you. Number one being looking for endo with a colonoscopy. A colonoscopy will miss endo on the bowel because it is usually growing all over the outside of the bowel not inside. The coil doesn't stop endo growing at all it just stops your periods and masks it.

You ned to do 2 things. 1 get a proper scan you can either have a transvaginal ultra sound with a really good sonographer or an MRI with a proper sonographer. If you gget either of these scans done by a sonographer who isn't a gynae specialist they will be a waste of time. I would go privately so you can get it done quickly. MRI is very good for showing adenomysiois but they should have seen that on the previous scan.

I can recommend someone really good. The pain you have sounds like endo but the uterus feeling low sounds strange I can't feel mine it sounds like there could be some other problem there. You could get this checked at the same time if you get a new gynae.

Armed with a good scan that shows clearly and scientifically that you are not imagining the problem you can go back to your GP and demnd to be sent to a different gynae , gain if yu have funds go privately to save time but ask around on Facebook endo group for who is a really good gynae. The BSGE specialist route seems to be a good option on the NHS . If you see a good gynae and have had a good scan it will really make clear exactly what the issues are and exactly what you need to get done to help.

Be careful of the dooctor who is pushing for a fibro diagnosis, fibromyalgia is a horrible condition but it is hadily for doctors a condition no one can do much about so they use it to label patients they can't help and right them off for any further help and investigation. I think it is completely inappropriate to offer psycho sexual counselling to someone with a physical problem. If you went to hospital with a broken leg they wouldnt say, oh yes that's probably caused by hidden trauma, oh you've been under a lot of stress lately that must be why your leg hurts. But they think it is ok to do this with gynae issues. I guess deep down it's the ancient belief in hysterical women still very prevelent in this day and age. Don't let their gaslighting affect you, you know your body better than they do stick to your guns and fight for proper treatment.

[JadeH92]

Adenomyosis is extremely hard to diagnose without a hysterectomy to look into the uterine muscles and even more so if ultrasounds are being carried out by general sonographers. I am not in anyway disregarding sonographers because they are all extremely skilled however, recent research is being carried out about picking up Endometriosis and Adenomyosis on Ultrasound scans by trained professionals however, we are very much in the early stages. Adenomyosis characteristics can sometimes also be picked up via an internal examination (if they physically feel your uterus is bulky) and MRI scans, if the Adenomyosis is focal and not dispersed. However, again the research into this is still very much lacking.I agree that Adenomyosis pain is massively dismissed and the lack of support for it is awful, but the Dr's don't confidently diagnose it because they don't know the characteristic or how to treat it.

If I was you, I was speak to your G.P, go in armed with as much evidence as possible and ask for further imaging such as MRI scans etc. Because if it is diagnosed or suspected you can sometimes be treated with Gonadotropin-releasing hormone agonist such as Prostap / Zoladex

Hope you get some answers soon

[Cutteridge74 in reply to JadeH92]

HiI have been suffering for 6+ years, having 2 laparoscopies, a sigmoidoscopy, an MRI and a full colonoscopy. I was told that I didn’t have endo and that is more likely to be IBS. I have now paid to go private and after an initial consultation, I have had a detailed MRI. The professionals who looked at the MRI and wrote a report and the consultant (world renowned) Have told me that I have endometriosis and adenomyosis in my uterus, possible deep endo on my bowel. Have also been told that a hysterectomy is not unreasonable which is what I am thinking of going for.

[Angellouise]

My 20 year old daughter is going through the same thing. She is waiting to see a gynaecologist who specializes in endometriosis, I have learned most gynaecologist don’t see it because they are not trained for it. It sure is a long terrible road trying to get the right Doctors. Don’t give up. I wish you luck

Have you checked out Nancys nook on face book for info ?

[AppleandPear]

Hey there. I have adenomyosis. My gynae (who is a real pro) said he had to enter it as (suspected) adenomyosis but to basically assume I had it.

You can't know you have it unless you remove the uterus, but he said if your uterus is bulky like mine is - and he said it's like I'm 3 months pregnant - then you can pretty much assume you have adenomyosis.

So, considering your symptoms, which are exactly like mine, you can probably bet you have adenomyosis.

You should definitely get MRI scans BUT I had a couple that didn't show anything and then I went to a specialist and he saw a bit of a thing on my ovary. He went on and did a lap and a hysteroscopy operation and had to remove a teeny bit of endo BUT he then found my uterus was actually attached to my rectum, and none of the checks I did had showed that up. If I were you, I would keep pressing for more MRIs and then ask for a lap and a hysteroscopy, because that will 100% examine all your bits from the inside and will give you real peace of mind.

Like you, my uterus has also moved a bit lower and presses a little on my bladder, and my doc said that's normal with a heavy/bulky uterus, it's not a real worry.

I had most of the symptoms you have but it was a lot to do with a pelvic floor dysfunction which hadn't been targeted even though my mild/moderate endo got sorted. See a bit further down for what I did.

You're right about the ovary pain. I also have a little scarring on one of mine where they removed the teeniest bit of endo. Every time I ovulate and sometimes just randomly, I'll feel an almost crampy pain just where that ovary is. My doc says this is normal because the scarring can make it a bit uncomfortable, and he's quite right in saying this is worse during ovulation, because that's when your ovary is trying to pop out an egg and the scarring obviously makes it a bit more painful, but it's usually nothing to worry about as long as you're getting regular scans to keep an eye on your condition. For me, I just take a single Ibuprofen and it usually sorts it out - only if it really is being crampy for ages, usually just goes away.

I also had bowel issues and bladder issues without any clear medical reasons. I have pretty much resolved them myself though! What you need to do, and this really works, though it takes a bit of a life reshuffle 1) eliminate all the stress you can - that includes going to the GP and really ensuring you're not secretly worrying about anything, so get all the tests and if you get a clear score, then try not to worry about your health 2) take 10 mg amitriptyline around 9/10 pm at night -> it's an incredibly mild dose of a muscle relaxant, and it's a real winner for endo/adeno 3) stick to a similar routine of eating little and often, eat lots of fibre and fruit and veg, avoid heavy meals or eating much in the evening or fizzy drinks/caffeine (look up the endo diet, it genuinely really, really helps) 4) start unwinding several hours before bed and DON'T WORK 5) go to bed at a sensible time - much more important than you'd think, for me a late night + stress messes with my body clock and your whole reproduction and digestive system HATES you messing with your body clock, even if you think you are a late-night person like me, trust me, try going to bed and unwinding earlier and it's real medicine 6) drink lots of fluids little and often (don't tank a litre of water at once, it'll upset your bladder) and go to the loo often but don't stay on there (otherwise it trains your body out of urinating/defecating properly) 7) stick with the fluids and loo routine even when you are out for the day, going out with friends and family but forgetting to follow your routine will end up in a painful situation 8) don't do high impact exercise, but definitely do exercise regularly - an hour's swim every day if you can get it, plus a bit of cycling, some weights, just go easy on it all 9) try to lose weight - not easy - but if you have a pelvic floor problem which I reckon you have, it just makes it ten times worse. I'm very overweight just know, but I know all these issues I have do get a lot better when I lose it 10) see a pelvic floor physio NOT a gynae or GP about your pelvic floor - chances are you may have an overtonic/over tense pelvic floor because your pelvic floor has probably been getting a hammering from all the endo/adeno -> if it's too tight, do pelvic floor relaxation exercises NOT strengthening ones -> pelvic floor disfunction actually may be the main thing that could be happening to you. I have literally not been able to empty my bladder fully, my poo literally was turning into pencil size strings, I had constant abdominal discomfort and then I started having loads of pain around my anus, and I couldn't sleep with my partner very well because literally I couldn't fit him into my lady parts and it was quite painful - nearly all of it was to do with crazily tight pelvic floor muscles and you could get similar issues if your pelvic floor is too weak, so check with a specialist. I did all the things I described above and unless I wear stupidly tight clothing for too long or get all stressy again or really do eat too much junk food for too many days in a row in too great a quantity and with not enough fibre, fruit and veg, it can go a bit painful again, but I usually just do all of the above and can usually sort it out so now.

Anyway, sorry for the long blurb! I genuinely think a lot of your most painful symptoms and the issues with sitting and intercourse (because I've had that too) are 100% to do with your pelvic floor, which tbh nearly everybody including your GP and the medical staff overlook but for me, it's what has been making my life hell. I will always have a bulky uterus but avoiding inflammation and flare-ups and trying to look after my pelvic floor is actually what helps most personally.