59 and finally diagnosed

So finally after being told by my doctor many years ago bad periods - even with shooting pains down thighs and in my hands - was normal for some women. I complained many times but was fobbed off with otc painkillers. And of course IBS was mentioned

Then it was definitely IBS .. 4 colonoscopies, one very painful sigmoidoscopy, many manual examinations, a “clear” pelvic ultrasound 3 years ago and more symptoms.. told diet, exercise and laxatives.. all the time. Even told I had a kinky colon which can cause constipation - in fact last time I was described as having a loopy colon.

I have been a vegetarian since 18, I have done yoga/swimming/cycling/gym for 30 years and have tried every diet and psyllium husks, triaphala and whole foods for years. But have felt so much pain and depression. Gave up dating after my last relationship 6 years ago as so miserable and in pain.

I had given up complaining so regularly about constipation, painful sex, side pain, hip pain etc as constantly told - menopausal symptoms and my arthritis (which I do have).

X-rayed for my hip pain 6 months ago and the physio I was referred to said it’s different for everyone - but your arthritis is slight in the hip and shouldn’t cause you pain - but maybe you have a low threshold!

All of my pains were apparently common symptoms with women my age. Even sent to women’s health clinic 6 years ago - who said constipation IBS but actually it was my ovaries…

The bloating after eating has been so bad for years..

Now on a vaginal ultrasound for HRT spotting they found a 6.5cm cyst on my ovary and that I have had endometriosis undiagnosed for I imagine over 30 years!!

Still spinning as they asked how were my periods? Surely you were in pain? Did you not seek medical advice? Weren’t you aware you couldn’t have children?

I never wanted children so I guess they never checked me out.. I have complained regularly for years etc

I was in hell with my periods and menopause and complained to my GP for so long.. but my pain was never listened to.

Still people tell me you look so well / can’t believe there’s anything wrong with you.. and that makes me very angry and upset as is that why I was never taken seriously?!!

Well now I m waiting for a consultation -they want to remove the cyst and one or two ovaries and waiting for MRI scan but I know it’s not looking good as I m in agony and have been warned about the endometric cyst twisting or rupturing. Also what damage has the endometriosis done left undiagnosed for SO long?

I am post menopausal so hopefully it stopped at 50 with my periods but I am sure there are adhesions .. as I m in pain and terrible constipation etc.. not knowing is hell but 2 weeks to go …

I am still reeling about this and feel so let down after so many referrals over so many years. With a female GP for over 10 years..

More awareness is so needed - I knew very little about endometriosis. I hate the thought of other women suffering so much and left undiagnosed… It’s so painful and devastating when no one believes your pain!!!

If I had wanted a family they would have checked me out earlier that is also what I was told.

[Dee_EndoUK Moderator Endometriosis UK]

Hi Hepsybar

Sorry to hear about everything you've had to go through to get your diagnosis - no wonder you're reeling - it's a lot to take in after so many years of painful periods and not being taken seriously by medical professionals.

When you go in for your surgery, ask plenty of questions of the consultant, both before and after the procedure to make sure you're comfortable with the process. I'd suggest jotting them down on a piece of paper and to take that with you so you don't forget anything on the day. Post-surgery you should have much more information about your condition.

Further information about endometriosis can be found on our website and, along with our forum, we also have face-to-face support groups all over the UK where you can discuss endometriosis and the issues you are facing with other sufferers - you can check out if there's one in your area at endometriosis-uk.org/find-a...

From your post it sounds like you've worked hard on your overall health and wellbeing with regards to regular exercise and looking at what you're eating and drinking. If you're still suffering with issues like bloating and constipation, it may also be worth considering working with a nutritional therapist who specialises in endometriosis. You can find one through the British Association of Nutritional Therapists website bant.org.uk.

Wishing you all the best with your upcoming surgery x

[BloomingMarvellous]

I feel for you. We share a lot and sadly I can imagine we aren’t the only ones out there. My pain and period issues started at 14 and now at 58 was diagnosed correctly after years of tumbling round the wrong depts. Endo and adenomyosis are the final revelation in this process. Agree with you that much must be done to improve womens health provision as frankly it’s pretty shocking and dismissive, at its best empathy and no answers. It has huge consequences of which rage is the least. Looking at treatment that many women have to endure and not so pretty results over that time however there is part of me that actually questions whether the things I’ve done to self care haven’t as effectively managed the situation and I may have been in a further pickle if I’d had what was on offer at the time. Treatments in surgery have improved over the last years but I know women whose surgery was less sophisticated have suffered beyond the pale with horrendous adhesions etc, or didn’t have HRT replaced post hysterectomy that has caused all manner of serious ills. So it’s not straightforward at all as to whether I’d have been better off physically at all. Many of the things I ended up doing are things that women find are important in their self management programme anyway.

I think the biggest difference would be the knowing would have had on my mental health and the ignorance surrounding being always unwell. It’s a severe life limiting disease process. Even with knowing now I struggle to get NHS treatment or consideration with the current crisis and ignorance that it doesn’t always stop with the menopause. We have a long long way to go . I celebrate however that there are places like this and a move towards saying this is really not enough .

[Hidden in reply to BloomingMarvellous]

Thank you for this... it means a great deal while I am waiting. And that is so true that maybe it's best it's later for treatment - as 30 years ago who knows what would have been done... I just got Covid too so I am feeling very sorry for myself and isolated so thank you for this. Wishing you well and when I am better I will definitely do a fundraiser for sure for awareness etc.

[BloomingMarvellous in reply to Hidden]

Hope you recover well from the Covid. You are very welcome and I wholly get where you are coming from. There are all manner of wonderful people with lots of supportive knowledge out there and experience to share of what to avoid. Putting together your puzzle of what pushes you off kilter aggravating your endo will become clear of you research enough. Surgery is part of the armoury that not everyone gets or needs for some it’s a big part of the puzzle. Trust your instincts and take time to consider the options. All the love 💕

[mrskiki]

I went to various GP for over 10 years with problems but like yourself not diagnosed until my 50s. I did voice concerns about impact on having a family as I got to about 30, I thought it might trigger them to pay attention if anything, and I remember her saying ' oh babies aren't easy, it's hard work, you don't want one too early' had my stomach prodded, told there didn't seem to be any lumps and sent on my way again. It was a very different era then, no forums like this for information.

[Hidden in reply to mrskiki]

Yes thank you for sharing. I'm so glad this is here and hopeful that women get diagnosed quickly.

[mrskiki in reply to Hidden]

It's so hard thinking back how travel, work, life, could have been so much easier isn't it. I remember avoiding so much to try and self manage. There was an era where GPs were penalised for referrals if I remember, so avoided it. I'm not sure anything we did or said would have got us treated correctly back then. My mum even suggested endometriosis to me but the doctors always ignored that suggestion when I asked them. I don't think they knew what it was or thought it relevant. Wishing you all the best for your MRI and op x

[Hidden in reply to mrskiki]

Thank you so much. Yes unbelievable how just fobbed off with laxatives and pain killers..