Suspected endometriosis - recommendations

[emmac3616]

EXPERT RECOMMENDATIONS NEEDED! I have been having cyclical pain under my right ribcage / right upper abdomen for about four months now. It varies in pain from a nuisance to totally debilitating. I've had lots of blood and stool tests, three ultrasounds, an MRI and a CT and all are apparently normal. Next step is to see a gynaecologist as I strongly suspect it is endometriosis, possibly diaphragmatic or thoracic - if its not that I would at least like to thoroughly rule it out. Can anyone in the London / East of England area recommend a consultant gynaecologist or specific centre where they have had this sort of treatment?

Can you be more specific about your symptoms and what the investigations you had, have found so far? It may be till now you seem to have asymptomatic (from what you've said as you have only had the pain for a some months and not persisently, it may be late onset but also look into other conditions like adenomyosis as well - thee MRI should catch that). Which is good as the pill and NSAIDs should resolve it long-term.

Have you had chronic issues with mobility, back and sciatica, debilitating pelvic pain, pain with sex and insertion to the vagina, severe vomiting and nauesa, cycles of severe constipation and/or diarrhoea. Just trying to see about symptoms like what sort you have, it's very hard to diagnose diagrammatic endometriosis as it could also be a respiratory condition, so definitely see a respiratory doctor as well to check for even having another condition as obviously its a very important area. It doesn't completely sound like endometriosis to be honest, but have you got other symptoms or have you had ultrasounds etc that you haven't mentioned as I'd hate for a respiratory condition to be missed so definitely see respiratory as well.

I recommend asking the GP to try the pill and/ or mirena coil can be amazing with heavy bleeding and pain. You might try different pills first. Yes, they treat the real cause as well (mirena will make uterus lining thinner, less bleeding and less cramps) So during a menstrual cycle, progesterone is released later on (luteal phase) - it basically tells the hypothalamus and pituitary glands, stop now you've done your job ( which is thinking the uterus lining), let's not go overboard and progesterone maintains the uterus lining (whereas after your period, estrogen stimulates it to grow more). Essentially the hypothalamus, or pituitary glands at that point stop producing FSH, LH - that means that less estrogen is produced. So more progesterone means that we can suppress estrogen secretion and hopefully stop more growth of the uterus lining (helpful for periods, as it can thin it so less bleeding and cramps). It can also help to stop the growth of endo lesions elsewhere because endometriosis lesions can create their own oestrogen.

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.

However, the only way for definite diagnosis is a laparoscopy and then they will often excise the endometriosis tissue if they find it etc. But endometriosis is a chronic illness and cannot be cured, after surgery it will grow back, it cannot be excised from everywhere to leave organ functioning. The main symptom of endometriosis is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month not just when on your period. Especially if you are having breathing difficulties you'll need a different type of surgery, well to explore in that area - you'll need cardio throatic surgery to be there and do that part.

Mangagement can look like pain medication depending on how severe your pain and symptoms are (can be opioids, NSAIDs) and hormonal treatments.
The links below have much more detailed and useful information.
https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/
https://www.nhs.uk/conditions/adenomyosis/

What blood and stool tests have they done? As you want to make sure those have been comprehensive. The issue with the abdomine is that so mant of the symptoms are unspecific which is why its so long to get a diagnosis is my experience. I'm very sorry you can't find anyone useful on the NHS, but have you had any breath tests, chest x-rays etc to check for something else. I'd see gynaecology and also respiratory and if you want a laparoscopy on your chest etc you'll need them to work with cardio-thoracic surgery because obviously gynecologist don't work in that area as well. I don't know private providers etc but I've heard of Spire as being pretty good.

Have you got any pain meds or other meds to help from your GP etc?

I have endometriosis, adenomyosis and other unrelated conditions such as asthma, however I was diagnosed with that at a few months old so pretty sure my endometriosis isn't related to that area, I am disabled by it. Drugs to stop my period do nothing as my period whilst painful is the least of my worries (even without it every day is horrible so it doesn't matter personally to me). For others it's life changing. I use lots of high dose opiods (I wouldn't if I didn't have to). I do also see gastrology due to my bowel issues - I find that having multiple specialists is the best way, though mine are all NHS and severe bladder issues as well overactive bladder (I see urology as well). I'm aiming for the sacral nerve stimulation now for that anyways with my pain consultant/palliative care (I recommended getting a referral to them as they know a lot on helping with that) but it took a while to get the referral tbh.

The only way to diagnose endo i keyhole surgery. Been there done that, no amount of imagining and tests showed I had it.
I went private, HIGHLY recommend Miss Kolomainen she is fantastic. I went to see her in London but I know she sees patients in few clinics, just google her and loads of information will come up. Good luck luck

Couple of things, one, there is a woman on TikTok called Jen who has thoracic endo which has collapsed her lungs several times and for which she has had repeated surgeries, might be worth following/contacting her. Her channel name is mycollapsedlung

Pelvic endo apparently can be found on 3d ultrasound but you need high tech equipment and an expert to read it. Another woman on TikTok went to Prof Davor Jurkovic in Harley St, she had a 3D transvaginal ultrasound scan and saw her endo. She says she paid £395 to have her 3d transvaginal scan.

If it isn't obvious I too have endo, diagnosed 24 years ago from a laparoscopy but the chances of adhesions from any pelvic surgery is over 60% so for me I would try to get a diagnosis without surgery.

Re diaphragmatic I think the only way they would know would probably be surgery but check Jen's channel out.

I know I am going to sound like a broken record re TikTok but there is a surgeon who does several endo ops a day, he has MRI stills from patients who come to him where other specialists have said no endo present on the MRI and he points to the film and basically says to the camera as if addressing that person, what the fuck did you think this massive 10cm mass was? His name is Dr Vidali his Tiktok account is Andrea Vidali Md. They do feature operations showing the endo deposits so fair warning if this isn't your thing and they aren't blocked with that sensitive content blackout.

Get as informed as you can and can I just say an absolute brilliant post by @TheLivelyViper very detailed and great questions to ask yourself and healthcare professionals.

@TheLivelyViper thank you for your hugely detailed post - that is super helpful. To expand slightly, I have cyclical acute pain in my gallbladder and diaphragm region but no breathing issues as such at present, but I think its a great shout to add respiratory doctors to my list of must sees! I do not have a history of endometriosis or particularly bad or painful periods BUT I also have had many years with very low oestrogen levels and i have now been on HRT for 18mths. My female GP was very dismissive so I have gone wholly private, and I am lucky that I have good insurance coverage. I will see a private gynae next but I think your point about mirena is a great one, as the progesterone withdrawl is when I get the symptoms (i take utrogestan 2 weeks on 2 weeks off, alongside evoral patch) so if that could be stabilised that may well help. In honesty, I just want to know what it is and that it is. I feel anxious about the possibilities of what it could be and whilst I obviously do not want it to be endometriosis, which i know is a chronic and deeply unpleasant condition, I would feel happier knowing what it is - if that makes sense? I want to rule it in or out at least! Thank you so much for taking the time to write all of this.

@sixeightfive thank you for your TikTok recommendations - i will have a look a those, I really appreciate you taking the time to share! And don't worry, I'm fine with the gory details ;-) Thank you so so much. I had actually heard of Prof Davor Jurkovic from someone else so if I think he may well be a great port of call for diagnosis.

@MellowMint thank you for that personal recommendation - in a sea of internet nonsense and chat GPT hearing first hand of good experience with doctors is so important. I really appreciate it!

I think you very likely do have thoracic endometriosis but obviously just check to see there isn't another reason for the chest pain, just to be overly cautious as it's obviously very important and sensitive area and so check that with a good respiratory doctor etc.

I'm sorry your GP was useless, is there any other GP in your surgery with an interest in women's health? They may be better and actually more informed. Yes I completely agree with you, sometimes people think I want to be sick but it's just that I'm already sick and I need to know what it is. Plus you can't get certain treatments without a diagnosis obviously, like it's the gateway to a lot.

The mirena could be a really good shout with progesterone withdrawal so definitely ask the gynecologist you see about that. Please keep pushing, I'm happy to clarify anything or give you any information I do have, I must say I don't know as much with thoracic endometriosis but definitely advocate well for yourself, have good lists to be prepared for an appointment and be informed as I've found the more you know, the more they listen. It's hard but honestly there's not really another option a lot of the time unfortunately. Hopefully you find a good private gyne with experience in this, who listens to you.

@TheLivelyViper just to give you an update - I had an MRI at the weekend and saw my gynaecologist today - she says they found suspected adenomyosis and endometriosis. They can’t see anything on the diaphragm on the MRI but are going to do investigative laparoscopic surgery to confirm and will excise any endometriosis they find and can. She says the pain could also be referred from somewhere else so laparoscopy is the best option to see what is going on. She’s also going to insert the Mirena when she does it. I really appreciate your help and insight and empathy. I am so sorry to hear you are suffering so much with it all.

That's great I'm so glad to hear that. I hope your laparoscopy isn't too far away and it's good they'll look at the chest area as well.

Are you using any medication etc for now?

Also great they'll put the coil in at least then you won't feel anything. Make sure they explore all the pelvic area and also the abdominal area, bowels, stomach, upper GI area and the chest as well.
Let me know how the surgery goes, but hopefully it all goes well and the excision goes well and helps a lot.

Thank you so much - you are very kind, i really appreciate the support.

UPDATE - thank you to everyone who took the time to support me on this post. The empathy and advice has been invaluable. I had my laparoscopy / hysteroscopy in mid October and the results were VERY interesting and decisive.

So, the MRI had shown signs of both adenomyosis and endometriosis but I was warned beforehand that this wasn't conclusive or a diagnosis and that a laparoscopy was required to be sure. Boy am I glad that I did that!

I do not have notable endometriosis but I did have surgical adhesions attaching my liver to my abdominal wall (hence my pain in the region of the gallbladder / diaphragm) and indeed my caecum / appendix to the abdominal wall. These were more than likely from my ruprtured appendix many many (25!) years ago. The pain I am getting is probably cyclical because I DO have adenomyosis which the gyane believes refers pain to my liver adhesions when I get a period. I also had a 2-3cm cyst on my left ovary which had not shown up on scans.

I now have the mirena in to try to subdue and manage the adenomyosis, so we will see how we get on with that!

My biggest conclusion is that in the UK healthcare system we all have to advocate and fight for ourselves. For every dismissive unhelpful doctor there are many brilliant, caring and commited ones. I am so grateful I kept going until I found someone who could help me.

Thank you ladies for your amazing support! @TheLivelyViper @sixeightfive @MellowMint

@emmac3616 So pleased you at least know what is happening inside your own body which I think is always comforting despite it being completely shitty. Knowledge is power and I hope the coil helps manage your symptoms.

I think I would be tempted to write a letter to the practice manager at your GP surgery to point out the dismissive GP behaviour and what you have had confirmed. The systems are not linked up, so your secondary care (hospitals) don't send all the information to your primary care (GP) they usually just send a summary letter of what happened and that goes on your GP record. All records are held separately, there might be a pointer in your GP file that basically says hey look here for results on X. It isn't one giant record of everything held centrally. That GP wouldn't be told directly anything about you, it would just go on your file. Get it pointed out to them.

I wouldn't let that go. I have been dismissed so many times by GPs and if my diagnosis was recent I would absolutely be informing the practice manager of what came about. It helps the next person who sees that GP. I know they are only human but they need to grow in their job and this is one way to educate them.

@TheLivelyViper your posts are incredibly helpful and your knowledge being shared will hopefully help other women who are suffering.

@sixeightfive thank you so much for your note - fear not, as soon as I received the post-surgery letter from the specialist I forwarded it straight on to the surgery with some 'feedback' to the GP in question, just highlighting that, as I told her at the time, this was not "just something that my body does" and that her comments had left me feeling dismissed and despondent, and that she should think about her choice of language in such interactions in the future. As you say, I think we are honour-bound to make the point, as much to spare other people a similar experience in the future as for our own selves (though I did feel much better for being able to go back and show her she was wrong).

Thanks again for the support! x

@emmac3616 I am pleased you have. The number of times people are just dismissed, gaslighted etc it is posted about on here so often. Maybe they will think twice before doing it again.

I'm so glad this went well and you got the answers you need. Plus diagnosis means you can access other treatments as well, so so needed. I haven't been on mumsnet for a while so missed this but am genuinely so happy for you!

Also so happy you gave feedback to that GP because honestly hopefully it will make them think twice the next time anyone reports anything similar. Even if its something different, hopefully the GP will actually investigate it and not just ignore them.

How have you been post surgery? Have you had a post op appointment with gyne yet to sort out management long-term or seen a different GP?