This is my first time posting so feeling a bit nervous about it.
I've been suffering from some un-diagnosed illness (or as the hospital staff like to call it "a mystery") for about a year now (I'm counting since my first A&E visit). I have had problems with my periods (bad pain, bloating, PMS, constipation, hot flashes, night sweats etc) for around 4 years but was always told this was "normal"; then for the last year I have been suffering from chronic pain, bloating, and general dizziness/fatigue every single day. I cannot stomach most food anymore (the symptoms become unbearable) and have urinary problems (frequency and pain). I also have pretty extreme night sweats almost every night. The pain has gotten so bad that I have ended up in A&E, 7 times within the 8 months.
Up until last week, I was almost certain that I had endometriosis. It would have explained what is happening, validated my experience and helped me understand how I can move forward from this. But my MRI and Ultrasound both came back "normal", the specialist told me that because hormones haven't helped my chronic pain (I've been taking a progesterone only pill for 2 months now) and my scans are alright, it's unlikely that I have endometriosis.
He referred me for a laparoscopy anyway, but I was told the wait is up to 6 months. He told me to keep taking the pill (I asked if I could stop as it could be behind my mental health crashing recently) but he said that not taking it would be "the worst thing I could do". Now I'm pretty scared, what if I wait 6 months and they find nothing? What if it's in my head (yes, I know, it's not, but it can really feel that way when I keep being called a "mystery")? And I can't help but wonder whether I'm making this worse for myself - so many women on here with endo that is extensive and visible are so strong and getting on with their lives, and there's me with my "normal" pelvis that cannot even walk without leaning on something, or stand up for a period of time, or concentrate on absolutely anything, or sleep without waking up soaking wet 3 hours later, or apparently even write a post without crying.
I keep being questioned, why do you need a stick to walk to the shop, why are you taking such strong painkillers, why can't you come to XYZ, how are you still sick, what's wrong with you, why can't you work remotely for a full day. And honestly, the answer is simply that I DON'T KNOW. And I don't know what to do.
Apologies for the rant, but goodness that felt good to get of my chest.
Thanks for reading and any advice would be much appreciated!
Lots of love to everyone.
Written by
june828
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Hi June, first of all I'm sorry that you're struggling so much. I'm sending you a nice big virtual hug, hope it helps.
Right, you sound exactly like I do! Like honestly down to a tee. So I can completely empathise with you, and I want you to know this is not in your head. Anyone making you feel so crap needs to be given a swift kick out of the door, because it is not your fault you are poorly. So please do not let others make you feel like crap because you're unwell, it's not something you have chosen and you can't change it. Even if it isn't endometriosis, there's obviously something going on and it needs to be investigated fully. Also, don't compare your experience with others darling, pain is so personal and should never be compared. It doesn't matter if some people are bed ridden and others are out doing marathons. The only thing that matters is that it is effecting YOU and stopping you having a life. How someone else copes is irrelevant, we all cope differently so please don't think you're doing something wrong when you are not!
Right, from what I know endometriosis is a sneaky little sausage and frequently hides on scans, so just because your MRI and other scans have been clear does not mean that it isn't there. Also the amount of endo you have is not connected to the amount of pain you have. Those are very personal things, it may be laying on a nerve which could be causing such horrific pain for you, so the severity of the endometriosis doesn't really contribute to the pain. It's more the placement.
I'm glad you're on the list for a lap. That's one thing at least! Try take some deep breaths and just let them investigate, whatever happens happens, it's out of your hands darling. But there are things you could do in the mean time, search the posts and you'll find loads on diet and pain relief you can try might be helpful while you await the lap
I'm also undiagnosed, but sending lots of love your way and hope you get some answers soon xx
Thank you so much for taking the time to get back to me and for your kind words. You are completely right and this is very reassuring! I just need to take a breath, whatever happens happens and I will be ok... or at least I’m going to repeat that to myself until I believe it! I hope that you also get some answers soon and feel free to message if you’re ever in need to speak to someone in a similar situation xxx
Your illness isn't a mystery, the doctors you have encountered just don't have the skill to diagnose you. The issue is them, not you. Please never think otherwise
I have stage IV endo (diagnosed via laproscopy and confirmed via the laboratory). Hormones do not help me at all. Your "specialist" isn't a specialist if they think hormones are a miracle cure for every woman. I think its important that you ask for a second opinion at another hospital. Your GP can refer you for this. You get to keep your first gynaecologist while you get advice from the other hospital. Is the "specialist" a general gynaecologist with special interest in endometriosis? Or are they a bsge endometriosis centre specialist?
None of your symptoms are normal and should not be considered as such. I'm sorry your doctors were uneducated when you first raised this with them.
Last time I had an operation for excision of endometriosis, the MRI scan showed one area of deep endometriosis. My surgeon found 4 areas of deep endometriosis. MRI isn't 100% reliable. It all depends on the quality of the person reading the imaging. Also, MRI will only show deep endometriosis (5mm or deeper). It will not show up superficial endometriosis.
Ultrasound in this country will only show endometriomas on the ovaries, no other endometriosis is normally seen on an ultrasound. My ultrasounds are always clear too, nevertheless, I definitely have endometriosis.
With regards to all the questions your being asked. I would send links to the endometriosis UK page where they explain it takes up to an average of 8 years to be diagnosed. They should make adjustments rather than being unreasonable. I'm sorry you've been treated this way.
You do know why you can't work a full day remotely, you are ill and no treatment works. Please stand your ground as its them that's being unreasonable.
With regards to the operation, it's worth letting them have a look (if the surgeon is a proper specialist and they will have a good look around). Its important they look at the bowel, bladder etc, not just the gynaecological organs. It's important to ask if they will excise (cut the endo off) or abalate (burn it off) as the latter is useless if the top is burnt off and there's more endo underneath.
Please don't compare yourself to others - it's no fun and no one really knows how others are really coping. As women with endo regularly say they're fine when they're not. The fact you can't stand up without leaning on something etc etc shows there's something physically wrong, therefore there's little chance you have a normal pelvis.
If you're interested in natural things that can help with pain feel free to send me a private message.
I forgot to say, if you are able to you could try the combined contraceptive pill back to back for 3 months, then a break. I had an awful time on cerazette (progestrone only pill) felt extremely depressed for two months. I ditched it and it's the best thing I did. Given it isn't helping, not sure why your specialist thinks you should take it and ruin your mental health. xx
My gyne tried to force me on it too (not an endo specialist, doesn't even have an interest in endo!), he said I could take antidepressants for the depression! And also recommended I take the combined pill if I really didn't want the progesterone only one. He didn't bother to check my notes and see that I have a blood clotting disorder called antiphilispholid syndrome plus Anti Ro and Anti La positive (both also blood clotting disorders) and a family history of heart attacks/strokes! He quickly changed his mind when I informed him. Honestly I think to these doctors it's a case of shove them on the pill and hope that it lessens their symptoms so they don't ask for surgery or more appointments. I think the waiting lists are so long now that they are actively putting women off of getting anything done, especially scans and ops which have 6-12 month lists. They need to realise though that we are real people with actual feelings, and stuffing us on hormones isn't an answer.
Well, first of all, it's not in your head! I know it is so difficult when you're not taken seriously, but if you are dealing with serious pain, you know it. When I had a laparoscopy several years ago, my surgeon came to see me after and said I had mild endo, but he also added that there is still so much they don't understand about endo. Many women have severe endometriosis, but no symptoms at all and find out when they are trying to conceive, and there are women like you he said, with seemingly mild endo, that have severe symptoms. So be aware that they don't have all the answers. However, things are looking much more hopeful as awareness of endo is increasing and as time goes by, more treatments will become available. I'd echo getting a second opinion at this time though.
Your symptoms taken together, make me wonder if you have "gut dysbiosis". This is not something they address in the NHS, which is frustrating, but other countries do. I saw a private Nutritionist who set me on a diet and supplements to help and it did get rid of some very strange symptoms I was having. Such as, I used to feel very cold, but my stomach would be boiling hot. I took good probiotics and stuck to the diet. Unfortunately I couldn't afford to keep going and so it didn't resolve the endo pain, but it did resolve a lot of other things that were making me feel so awful. There are folks that call it "Candida overgrowth". I didn't have some of the classic "Candida" symptoms, but changing diet, etc did really help, especially with my mental health. Finding a Nutritionist isn't easy as some of them are into some strange stuff, which you really don't want, but there are some good ones out there.
I forgot to say, the comments by the "specialist" that your ultrasound/MRI is normal and hormones don't work so you don't have endometriosis, is against the guidelines for endometriosis diagnosis and management (NICE Guidelines for Endometriosis diagnosis and management).
The summary versions section had a pdf called "algorithms for diagnosing and managing endometriosis".
This sets out that scans such as mri and ultrasounds can be clear and the patient still could have endometriosis. That hormonal treatments may not work or be tolerates/desired.
Please don't give up. A second opinion is important x
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