Could my symptoms be endometriosis?

[ColourfulK]

Hello!

I hope you are all coping ok. I felt compelled to join this forum because I am getting to the end of my tether with my symptoms and lack of support from GP’s. I would really appreciate some guidance on whether you think my symptoms could be endometriosis and if anyone has had any similar experiences please?

I am 43 and have experienced awful periods all my life since I started at the age of 15. After trying medication I went on the combined pill and remained on it until I was in my 30s. During this time I had recurring gynae, abdominal and bowel problems. I have lost count of the number of times I went to the doctors looking for answers. I was diagnosed with depression, numerous UTI’s, IBS, food intolerances, a retroverted uterus, fibroids, and hypermobility.

When I was 29 after experiencing overwhelming fatigue and pain for months I was diagnosed with ME/Chronic Fatigue syndrome and was referred for CBT. Ever since then whenever I go to a GP they usually say my symptoms are likely to be a flare up of my ME.

In my early 30s I came off the pill and my periods were (and still are) horrendous. I was told this was probably due to my fibroids and given naproxen and Tranexamic acid to help.

After years of trying to conceive I fell pregnant at the age of 37 and am over the moon to be a Mum. The labour was extremely long and painful and I ended up having to have an episiotomy and forceps delivery.

Since then, my periods have got worse and I am fed up of being fobbed off by the GP again. They are now blaming my age and hormones! I can’t actually believe the amount of times I have been told that it’s probably just one of those things. I should point out that I have lived in a number of places so this is a number of different surgeries.

In 2017 we tried a cycle of IVF for a second child but it was unsuccessful. They could still see the fibroids then but said they were smaller.

I have pain before my periods, during and after and the fatigue is awful. I am also really struggling with nausea and lightheadedness now which comes in waves throughout the day. The pain is in my lower abdomen and lower back, although it does move up my back too and round my hips and down my legs.

In November I went to my GP again because the symptoms are really affecting my life and I was offered the pill again but no diagnostic tests for anything, not even bloods. Since then I have been back numerous times and every time it’s a different GP. I was referred to a musculoskeletal specialist and they said the problem isn’t muscular which I already told the GP. It honestly feels like they think I am being dramatic and making it up.

I am physically and emotionally drained with it all. I have another appointment tomorrow morning and am going to ask for another referral again.

How do you get doctors to take your symptoms seriously? My Mum went through the menopause at 51 so if I I follow suit I still have a number of years of this left!

Thank you for reading!

Xx

[archie24]

This sounds so horrible, really sympathise. I don't know much about most of your experiences but I've been struggling a bit myself with some similar symptoms, I'm 22 and on my period I get extreme abdominal pain that prevents me from working and sever nausea (cant keep any food down whatsoever) also have painful IBS during period and ongoing UTI symptoms that I'm trying to discuss with my GP atm. Like you I also experience fatigue and occasional pain in my lower back. Been told numerous times that it's almost certainly endometriosis but that theres no point in checking unless I want surgery, and so currently back on combined pill. Paid £200 last month for a gyno to tell me that it's just one of these things. Sometimes it really feels like there's no research into it and that options are so few. I think general gps and gynos can be not great with this kind of thing, I think a specialist in endometriosis and womens health is the way to go, at least thats my next step i think. Hope you are doing okay and that things get better.

[ColourfulK in reply to archie24]

Hello! Thank you for replying. I am really sorry to hear that you are struggling too and I really hope things improve for you soon. I have been referred again today so it’s a step in the right direction. I hope you find a good specialist. Good luck and take care x

[Purple_Badgers]

Aargh! “Just one of those things!” I could cry... Very similar story to mine, similar age, fobbed off so many times. Gynae, abdominal, bowel and mental issues - none of which were ever taken seriously or connected as part of the same overall problem. The pill never helped, just messed with my emotions & ability to cope! Then I had a blinding migraine with aura and gave up messing with pills. Then everyone says “have a baby, your periods will improve” - by the time I was ready to have a baby, it was too late, I couldn’t conceive. IVF was unsuccessful, unfortunately. GPs always tried to blame everything on anxiety & depression, when in reality it has been endo causing mental health issues. They must help you. Stick to you guns and ask to be investigated for endometriosis. Laparoscopy is the only way to rule it in or out, and could be the start of improving your life. I hope it does xxx

[ColourfulK in reply to Purple_Badgers]

Hello! Thank you for replying. Sorry to hear about your struggles too. I know how physically and emotionally draining IVF is so hope you are doing ok. Really sorry to hear that it was unsuccessful. I think you hit the nail on the head when you say that they don’t link symptoms together. It’s too easy to treat each symptom on its own and not look at the bigger picture. I have been referred a number of times before in different places across the country but nobody has ever suggested endo as a possibility and I didn’t know to ask. I had an appointment this morning and asked to be referred and investigated for endo so hopefully that’s a step in the right direction now. Thanks again for taking the time to message and I hope you are doing ok xx

[stephanyp]

ColourfulK, I completely sympathise with you I had the same issue with my gp I change drs and he instantly started the ball rolling sometimes you feel like your going mad and no one listens. You know your body better than anyone so when they tell you it’s just a “bad period”🤦🏼‍♀️ I would definitely recommend changing gps or even if you ask too speak too a different gp within the surgery.

I hope they take you more seriously and are able too help you. Best of luck

[ColourfulK in reply to stephanyp]

Hello! Thank you very much for replying. I am sorry to hear that you have had the same problem and hope you are getting sorted now.

I have seen so many different GP’s/gynae consultants over the years but nobody has ever suggested endo as a possibility and I didn’t know about it to ask.

I went to the doctors again this morning and finally have a referral to be investigated for it so fingers crossed the gynae consultant agrees.

Thanks again for taking the time to message xx

[MissPickles]

I think you have to approach the appointment with a clear idea of the outcome you want. Doctors have little time for long convoluted stories, just point out three or four key symptoms, say this has been going on for x years and is getting worse not better, and say I want to be referred to gynae to sort this out

The trouble I have found is if you say too much in an appointment the doctor can go off down the wrong track, and suddenly you find yourself agreeing to take some new tablet and "see how it goes" Stick to the key trigger words that they need to hear, and practise saying "I want" instead of "Can I have.."

Good luck! If it fails just book straight back in to see another GP or try an appointment on the NHS Livi app to see someone different x

[ColourfulK in reply to MissPickles]

Hello! Thank you very much for replying. I have done that a number of times but unfortunately I didn’t know about endo and it was never mentioned to me as a possibility. I have been referred several times to gynae consultants and was diagnosed with fibroids and they were still there when I went through IVF as I had regular scans during that process. Due to that every time I have gone to a GP about my symptoms they put it down to my fibroids, IBS and ME and send me away again.

I went back to the doctors this morning and asked to be referred again to be investigated for endo and they agreed so hopefully it’s a step in the right direction.

Thanks again for taking the time to reply and I hope you are doing ok xx

[Lindle]

It is utterly shocking that this is still going on. There is a clear treatment pathway that should be followed and every symptoms you have mentioned is typical of endo. It is well acknowledge that years on medical treatment is a risk factor in the development of severe endo, the most common location for which is the uterosacral ligaments behind the uterus. There is a nerve that runs along the ligament (pelvic splanchnic nerve) that arises from the same roots as the sciatic nerve and typical US ligament symptoms are lower back and leg pain (usually but not always predominantly the left).

Quote from the ESHRE endo guideline 2.1:

'It has to be emphasized as well that prescribing oral contraceptives in adolescents with pelvic pain without a definitive diagnosis of endometriosis might contribute the well known delay in diagnosing the disease. It has been argued that starting oral contraception in young girls because of primary dysmenorrhea could be indicative of the diagnosis of deep endometriosis in later life (Chapron, et al., 2011).'

A lap isn't the only way to rule endo in or out and often misses it. This might be due to the lack of experience/skill of the surgeon but also because it isn't always visible at a lap. Deep endo outside of the peritoneal space such as in the rectovaginal septum (between the bowel and vagina) can't be visualised and will only show on scans done by an expert in gynaecological imaging or can be felt when doing a through clinical exam (fingers up the vagina and bowel to feel for deep nodules.

Also unfortunately menopause doesn't cure endo, especially if it is deep. I was diagnosed for the first time with stage 4 endo at age 51 which was 7 years after surgical menopause. Feel free to pm if you need any more help.

[ColourfulK in reply to Lindle]

Hello! Thank you very much for replying. All that information is really helpful. I am sorry to hear what you have been through too.

I have lost count of the number of times I have been to GP’s over the years but nobody has ever suggested endo as a possibility and unfortunately I didn’t know to ask. I have been referred several times to gynae consultants and they found fibroids after doing a trans vaginal scan so it was left at that and I was sent away. When I had IVF treatment a few years ago I was told the fibroids were still there but smaller yet my symptoms have been getting worse so it didn’t make sense to me. That’s when I was told that it was likely due to my age and hormones.

Anyway, I went back to the doctors this morning and asked to be referred to be investigated for endo and they agreed so now I am armed with more information I feel I am better prepared to talk to the consultant.

Thank you again for taking the time to reply and I hope you are doing ok now. X

[Cailleach]

Hi, I agree with Miss Pickles about the approach to your GP, in your position my aim would be gynae referral and better pain relief.

I was also given good advice years ago, from a GP. Choose one GP from a practice who you think is the most helpful and try to always see them, you may have to wait longer for an appointment of course. You develop a relationship and don’t have to explain yourself each time. I found this is true and it helped me a lot.

If you look at the practice website it might give you an idea of whether anyone has a particular interest in gynae issues.

I hope things improve for you. It does sound like endo to me.

[ColourfulK in reply to Cailleach]

Hello! Thank you very much for replying. I have seen lots of different doctors over the years, some practices I did see the same doctor each time and others I had to see different ones depending on how they worked. Unfortunately, whoever I have seen and on how many occasions nobody has ever suggested endo as a possibility. I have also been referred to several gynae consultants in different parts of the country but again there was no mention of endo and I didn’t know to ask. I was diagnosed with fibroids, IBS and ME so since then everything has been attributed to that.

I had another appointment this morning and asked to be referred to gynae again for investigation for endo and they agreed so hopefully this is a step in the right direction now.

Thank you very much again for taking the time to reply. Now I am armed with information I hope I can get some answers!

I hope you are doing ok x

[Cailleach]

Forgot to add, another thing I have learned, go back to GP for a second or third appointment, if they have fobbed you off or prescribed something that didn’t help. Out of sight, out of mind, they are busy people. It can be hard to face doing that sometimes, I know.

[curlyjo]

Dear ColourfulK, I was sent your email as one who used to regularly use this site. I'm 52 now and no longer suffer endometriosis symptoms (although I have the opposite problem in having to have HRT patches to stop the night sweats and hot flushes! But this is a walk in the park compared to the pain of ENDO. How our hormones change our lives!) I agree, though, that waiting until your menopause is not the answer.

I have heard too many times (sadly) that doctors don't take women seriously with this issue and I can honestly say it wasn't until I cried down the phone at a doctor and told her I couldn't take any more pain that she put me on tramadol and signed me off work. I was a teacher and was not functioning enough to be able to do my job. Being a demanding patient and telling the doctors what they were offering me wasn't working was the only way. This was the beginning of a journey where I had a referral to the hospital and ended up having surgery. (Even at the point of my op though I was offered alternatives by the surgeon; you kind of think they don't want to help sometimes. But I absolutely insisted on the surgery and nearly wept that they could consider pulling out of giving me surgery minutes before the operation!)

Afterwards my doctor saw the report and said, 'oh yes, I can see now why you were in so much pain'. The endo had spread to the top of my perineum (ouch) and I was diagnosed with adenomyosis. Also one of my ovaries was covered in endo. After surgery things got worse not better though (which isn't always the case for women who often get great relief from it) and I referred myself to a dietician; Henrietta Norton (who was recommended to me from a woman on this site at the time) as I was still having to use a lot of tramadol and other pain medications (btw naproxen didn't work for me; it upset my tummy, but mefanamic acid was a hard to get hold of but better option for me). The doctor said GNRH drugs would be next. I didn't want to do this to my body as I'd read such awful things, so I decided that I would try the endo diet and I changed my diet drastically. I came off anything flammatory (gluten, wheat, dairy etc) and took in many foods and special vitamins as advised by my dietician. Her book is called 'Take Control of your Endometriosis' and I did everything she told me to. Within 6 months incredibly I was pain free and off all my medications.

Now this is my journey/story and I'm sharing it with you in case it helps you (or any one else on this site reading this). I'm not saying any of the above will necessarily be right for you, but I will say, whatever you do, don't take no for an answer from your doctors. See other doctors if necessary and insist on a hospital referral. Sometimes it's only when they open you up surgically they can see what is going on. They are often very reluctant to do this it seems so this where you need to push. Ironically it's often the female doctors I've seen who are least sympathetic so do try them all if you can. Don't be fobbed off by the age and hormones excuse. I got endo for the first time at the age of 45 and it was horrendous. Once referred to in the hospital things were a lot better (I was seen at the JR in Oxford) and I was taken more seriously. But we know that it's a postcode lottery so I just hope that you will be seen, that you will be taken seriously, and offered the help you need. And if you are willing to try the diet, give it a go. It helped me until the menopause and now I can eat what I like. And do..! All the best, I'm thinking of you. EX ENDO sufferer

[ColourfulK in reply to curlyjo]

Hello! Thank you very much for replying and I am sorry to hear about everything you have been through.

I feel very much like you did and am currently that demanding patient. Over the last 3 months I must have had about 12 telephone/face to face appointments but have got absolutely nowhere. I got so fed up with it that like you I ended up crying and saying that I’d had enough of being fobbed off and that I know how I feel isn’t normal and I shouldn’t have to just put up with it! I was told that it was likely hormonal.

Unfortunately I didn’t know that my symptoms could be endo so I have never pushed to be investigated and having been referred to several gynae consultants over the years I assumed they would have ruled it out. I was diagnosed with fibroids, IBS and ME so whenever I have gone back to the doctors all my symptoms are put down to them.

I went back to the doctors this morning and asked to be referred to be investigated for endo and they agreed so hopefully it’s a step in the right direction and I can continue to push for it now that I am armed with more information.

I am so sorry to read what you have been through but glad that you are out the other side now. Thanks for the information about the diet. I will definitely look into that.

Thanks again and take care xx

[curlyjo in reply to ColourfulK]

Well done for pushing forward on this. The laparoscopy is done by key hole surgery and if you push for one can I reassure you it is a quick surgery and because its keyhole, recovery is quick. I hope you get a solution soon and pain free too! Take care, xx

[ColourfulK in reply to curlyjo]

Thank you, I really appreciate it xx