To feel so angry that it’s taken over 2 decades to come to this diagnosis?

[Picklemeyellow]

Maybe I am BU or maybe not but it’s early days and I’m feeling so sad and angry and maybe I just need to to take stock contemplate it all?

So, I have suffered with my periods since they began at the age of 12. Very heavy periods which I would have to plan my life around and often stay at home on the heaviest days because of flooding. I’ve been so anaemic that I needed infusions last year. I have have been under the same gynae department since my mid 20’s. I’ve had recurring uterine polyps and thickening of my uterus. I’ve had a d&c, several hysteroscopies to remove the polyps and an op to remove the most stubborn polyps as there were so many at one time.
Last year I had a uterine ablation, I was hesitant as I was concerned about Post Ablation Syndrome which my gynae reassured me it was highly unlikely and actually laughed at me for asking so many questions about the procedure (turned to his nurse and said ‘Ah, this is the lady I was telling you about, the one who emailed so many questions’). Lo and behold I have developed this Post Ablation Syndrome and am now in agony during each period.

I have also suffered from daily gut issues since 1998. Again, endless tests (2 colonoscopies, 2 gastroscopes, a pill camera endoscopy and scan for bile acid malabsorption). All clear and I’ve basically been told my gut issues are all in my head even been referred to a neuro-gastro team at a London hospital by my local gastroenterologist. Of course, I have been thankful for all of these tests.

5 years ago, at the age of 43 my sister was diagnosed with endometriosis due to a mass on her ovary which turned out to be endo.

I have mentioned this several times to my gastroenterologist and gynaecologist and asked if all my issues could be related to endometriosis as I’d read it often runs in families. Basically I was greeted with a shrug to this question.

During my gynaecologist follow up in October and discussing my pain since the ablation I asked if I could have a contrast MRI scan to check things over. The results have just come back and surprise, surprise…..the gynaecologist says it is showing endometriosis and quite severe adenomyosis too. He is referring me to the endometriosis team.

Whilst I am happy for this referral and to talk with someone (eventually) about this condition I am so very sad and pissed off right now. I am 51 in March and have had decades of pain and discomfort within my pelvic region and with all of my digestive system. It has shaped my life in a way I hadn’t planned for. I have had to give up on a career I wanted because of my unpredictable symptoms. I now work part time in a job I’ve never really wanted to do and doesn’t pay half of what I could have earned. I’ve had to cancel so many plans and fun things in the past, promised my dc I’d take them places then cancelled last minute, again because of my unpredictable symptoms. That’s made me feel like such a crap parent.

Even when I mentioned my sister had endometriosis still no-one took me seriously. Last time I saw my private gastroenterologist she put her head in her hands and said ‘what on earth am I going to do with you?’, this from a woman I’m paying £200 an hour to see. Her advice for my pain and discomfort was probiotics and meditation!

I know it’s early days and I’ll probably calm down but how to I get over mouring those lost years I’ve spent in pain, discomfort and panic wondering what is wrong with me when all around me people (including family and friends) where telling me to man up and get over myself because it’s all in my head? And btw, I do spend most of my time with a ‘happy’ mask on my face and just get on with it even though inside I feel like shite.

I am so angry right now, also upset that I’ve had so many tests which some were far from nice and had I been diagnosed with endo earlier it would have saved the NHS a lot of money. I feel that I’ve been an unnecessary drain on the NHS.

Should I just shelve this in some far flung dark corner of my brain and push on through life? How do I do that right now?

Write to every single medical professional that has belittled, misdiagnosed and made you suffer.
Tell them how their lack of care, professional curiosity and willingness to listen to a woman in pain has caused your life to be derailed.
You'll feel better for it.

Absolutely awful op but sadly it doesnt surprise me.

I spoke to a consultant for ages about a mri showing metal in me!.. He never knew that actually an mri doesn't show up metal at all. 3 months of time wasted until someone else I need an xray.

BTW what is a contrast mri scan?

The more I’m mulling everything over from the past, the more angry I feel.

I am currently sitting in so much pain and have been for the last 3 days. Last year I had a uterine ablation. I researched as much as I could about this procedure and asked the gynaecologist lots of questions regarding this. I couldn’t have a face to face appointment due to Covid restrictions still in place so I emailed him a series of questions.
Maybe many people don’t do this but I wanted to know all the risks and benefits etc.
One of my key concerns was Post Ablation Failure as I had joined a FB Ablation group and a few women had developed this (and it did not sound like much fun). The gynae assured me this was very rare and nothing to be concerned about.
When I eventually had the pre-op appointment he (jokingly?) turned to his nurse and said ‘Ah, this is the lady I was telling you about. You know, the one asking sooooo many questions!’ I remember feeling really embarrassed by that but it’s my body, I only have the one and I wanted to be sure I was making the right decision.
Anyhow, 18 months on I have now been suffered over 12 months in agony every period because, lo and behold he has co firmed that I have developed Post Ablation Syndrome. Was this because I have endometriosis and adenomyosis and they never checked before the ablation? Who the heck knows?
Tbh, I’m pretty fed up being a woman right now, I only opted for the ablation due to years of very heavy periods which had left me with ferritin levels of 3 and was so iron deficient I needed infusions (that’s another piss off, how my GP allowed me to drag on through my days knowing my ferritin was so low and knowing the iron supplements wrecked my already wrecked digestive system. I had to plead for the infusion). I really must be one great big push over when it comes to my health 🙄

It really is, sadly. It leaves me worried for my dd especially as she has such heavy periods herself.

ChristmasEvemaddness it’s a special dye they inject into you whilst having the MRI, it shows up certain areas clearer.

I knew this would be endo. I talk to everyone about mine. Most women have never heard of it. The medical profession as a whole largely don't have an understanding of it. Its crazy that it affects so many of us yet it seems to be a mystery to everyone. I wish womens health would be properly funded and researched.

It is amazing just how many women have no idea about it unless it affects them or someone they know.
I’ve been telling a few friends and they have no idea, even less when it comes to adenomyosis.

It's rubbish. I've suffered terribly with issues my whole adult life too. I did get diagnosed with PCOS when I was younger but I've had other issues since. I have a recurring pain in the same place and have done for a few years. I went private and had various scans. They said it's probably endo but they can't see it on a scan and the only way to know for sure is surgery and recommended I just live with it rather than having potentially unhelpful surgery. I feel like there is still so much progress that needs to be made in women's issues. We're expected to just grin and bear the pain and life altering, excessive blood loss every month.

I am so sorry you have suffered for so long & the impact it's had on your life is horrendous.
Women's health issues are never treated seriously, we are just expected to live with horrific pain & bleeding, it's really not ok.
I hope they finally have some sort of appropriate treatment plan for you.

I’m really sorry. I knew you were going to say endometriosis before I even opened the thread. The medical gaslighting is very difficult to come to terms with, alongside the mixed feelings about finally receiving a diagnosis and an explanation.

I was diagnosed aged 30, my periods had been excruciating from the day they began. I requested my medical notes and found ‘query endometriosis?’ written in the notes from a GP appt I had attended about awful period pain 15 years earlier.

Infact I was only diagnosed under the infertility pathway. Gynaes and GPs didn’t care about the severe pain I was in, only the infertility piqued anyone’s interest. I was just given strong painkillers and put on iron tablets permanently.

Happily the infertility pathway led to excision surgery which resulted in my period pain being practically none existent now! I grieve all the years I’ve spent shaking, sweating and crying on the bathroom floor or in bed with pain. It limited my life horrendously.

By the time I was diagnosed there was so much damage that I couldn’t conceive. My DD is the result of NHS IVF. I’ve had one surgery and am awaiting a second to remove deep endo. Let alone the cost to my family, I must have cost the NHS a fortune. Which perhaps could have been avoided with timely excision surgery 15 years earlier.

My sister also suffers with dreadful periods, and has been fobbed off with various drugs. She’s now prescribed morphine! Even that didn’t trigger investigations. I insisted she needs a lap, been on the waiting list a year with no end in sight.

I’m petrified of my DD developing it, and will be ruthless in making sure she has proper investigation and treatment if there’s any hint that she does. When I found out we were having a DD, one of my first thoughts was that I hoped she didn’t suffer from this debilitating disease.

OP I feel your pain. For years I was fobbed off. I remember one doctor telling me that I was over exaggerating about the blood loss. He calmly mansplaned that women lost around an egg cup full of blood a month. I asked him if that included an ostrich egg. I told him I was more than happy to collect all the sanitary wear for an average month and present them at my next appointment, for research purposes, to prove that it was closer to a pint of blood I lost monthly.
When I finally fell pregnant I was so anaemia from years of heavy blood loss my iron stores were non-existent and I was in hospital for over a month while they sorted it out. I had iron infusion. Six weeks after DS was born I had loads of comments about my “sun tan”, I’d been so pale for so long due to anaemia, when my iron levels returned to normal I looked like I’d had two weeks in the Caribbean.

And unsurprising, this happened to a woman

If a guy would have been complaining about a urinary problem he would have had surgery by now and a three night stay in a private suite

You have every right to feel so angry this is terrible.

I agree with complaints, I'd actually be looking for compensation tbh. It's not a case of finances will make things better or take away what you've been through but you know what, if that compensation could (for eg) pay for you to have a holiday with dc and switch off from all the crap for a week or 2 OR allow you to rebook cancelled things from the past to enjoy with dc then it's worth it.

I'd also think about therapy where you can process and come to terms with everything.

Good luck.

My story is similar to yours except I was diagnosed younger thanks to the endo blocking a fallopian tube and causing an ectopic that came close to rupturing. It was always implied that I was making a bit of a fuss about nothing until I got a cup and found that no, it wasn't a teaspoon that looked more (as we were told in school), I was losing pints of blood and my pain threshold was unusually low, it was actually very high as I managed invasive procedures under a local. The relief of finding out I wasn't exaggerating or a wimp was immense. I was also getting ill all the time as I was losing so much blood, although I wasn't anemic.

There is hope, especially if you're done with having children. I've had some of the endo removed and have a mirena coil that helps manage it. I've also had an endometrial ablation that literally removed the endometrial layer. Combined these treatments have transformed my life. I rarely even notice my periods, I rarely bleed at all or need a painkiller. I'm hardly ever ill and my career has taken off again. There are so many more options than when I was young that can help, especially if you can convince them you're done having babies (that took a while too and they wouldn't really intervene until I was 40).

I suspect if they actually diagnosed endo they'd find it in a lot more women. There is a general lack of care about our pain and an assumption we're making a fuss, rather than a real desire to get to the bottom of why we're in agony.

I knew it would be endo too. Mine took 14years of symptoms, and many, many appointments being fobbed off.

I had to pay privately for an assessment/lap in the end and the (lovely) specialist was shocked with the scarring he found - I’d had multiple ruptured cysts over the years and mangled one side of my reproductive system. But I’d been gaslit into that pain being normal.

The only time a GP was slightly interested was when it was stopping my husband having sex. Nothing about the pain I was in, missing work, pouring blood. The fact that I wasn’t functioning sexually for my husband was a bigger deal.

have A look at the endo revisited Facebook group. They’ll help decipher the guidance and get you the treatment you need.

Naga Munchetty also has been very vocal:

www.google.com/amp/s/amp.theguardian.com/society/2023/oct/18/naga-munchetty-i-was-failed-and-gaslit-by-nhs-despite-debilitating-periods-and-symptoms

Thanks op. I'm having mri for suspected endo next week but no one said its a contrast one. However it does mention dye.

I would also look into compensation

Yep - I was in agony basically since my periods started at 12. Diagnosed at 42. Fobbed off for years with 'just period pain' when it was so bad sometimes that I threw up or passed out

I find generally providing it's not life threatening. NHs is more about masking pain than solving pain

This is just awful. I’m so sorry to you and the other posters with similar stories.

I think you are absolutely right to be angry. You are probably grieving too for the losses you face. I guess my concern is that the anger doesn’t negatively impact your life further. I think you need to allow the anger to work through but watch out for it sticking around too long. ACT therapy might be helpful if you find it does. Acceptance and Commitment Therapy.

For now, that anger can drive you to get better and may be help towards change. I work for the NHS and I think it’s worth you getting in touch with PALS. Some people create ‘patient stories’ by recording their experience somehow. You can be anonymous.

I don’t usually agree with suing the NHS because it’s tax payers (our) money that could be used to create a better service, but sometimes it’s the only way to get change. My Health Board listen to patient stories and have a culture of learning but I know some don’t. Might be worth talking to a no win no fee lawyer? But be aware that these things can drag on and might keep you stuck in the angry phase.

There might be a charity who would use your story to promote more awareness.

There is no requirement to do this though. If you want to spend your energy on the things that nurture you and you enjoy then you should, but doing something like this might help you let go of the anger.

Just to be clear, I’m not telling you you shouldn’t be angry. I’m not sure how you could avoid it. I just don’t want the anger to become a secondary symptom of all of this that eats into your life more, IFYSWIM.

Good luck lovely. I hope having a diagnosis helps.

I was very lucky to have been diagnosed when I was in my early 20’s - by accident due to treatment for an ovarian cyst. Multiple operations & having had the mirena coil fitted 10 years ago changed my life. Does seem to be in the family my Mum & her sisters all had hysterectomy in their 30’s. I’m hoping the coil will see me into menopause so I don’t have to have hysterectomy.

But as a mother of 2 daughters both suffering from heavy periods, short cycles & pain eldest has been diagnosed with IBS. But they wont investigate any further.

Treatment is so hit & miss - it’s sad that we are just left as females to accept this.

If it mentions dye then it’s a contrast MRI.

Be aware though, more often than not endo doesn’t show up on MRIs. So if you have a clear scan don’t let them fob you off. Only a laparoscopy can definitively diagnose it.

I've been telling GP's about my horrendous periods since I was 14. Responses range from being ignored, laughed at, accused of exaggerating my symptoms, and told I should be grateful I don't have cancer. One GP told me I couldn't possibly have endo as I have children. All assured me my periods were "normal" and that other than putting me on the pill there was nothing to be done.

Finally, at the age of 36 I saw a lovely GP who confirmed that no, it is not "normal" to bleed for 10-14 days every month and be in so much pain you vomit, pass out and or are unable to move. She referred me to Gynae and after a long wait and some tests they confirmed that I have "very severe endometriosis". It has spread and attached itself to my bowel, and my ovaries have become "stuck" to my uterus due to extensive scar tissue. I was told that if it had been caught earlier there may have been a number of less drastic medical and surgical treatment options available to me, but the situation is now so bad that a total Hysterectomy is the only option. The endo is so severe that the surgery will be "complicated", meaning keyhole is not possible so it will have to be open surgery. As well as a Gynae surgeon they will have to have a Bowel specialist present, and my local hospital don't have the resource of expertise to perform such a complex surgery so I have now been referred to a specialist endo centre. This means having to travel 1.5 hours each way for appointments.

I'm grateful that my surgery will be performed by endo experts, it makes the whole thing marginally less frightening, but the referral to the endo centre means another long wait. It's now over 3 years since I was first referred to Gynae by the lovely GP. I've been on the waiting list for surgery for 18 months now and there's no end in sight. In the meantime I've been put into chemical menopause (by monthly injections) so my periods have stopped, which is a blessed relief, but I still have pain and bowel symptoms that impact my day to day life. The worst thing is I'm very conscious that the longer I wait, the worse the endo is getting and the more risky and complicated my eventual surgery will be.

I know that anger is a wasted emotion, and it doesn't help me to hold on to the past. But I am still fucking furious that I have spent my whole adult life suffering needlessly. It has impacted my work, my relationships, ruined countless special occasions and holidays. There is a long history of the medical profession dismissing, disbelieving and minimising women's pain. We may have come a long way but it's still very much a man's world.

It fills me with blind fury that women's problems are not taken seriously and we continue to suffer for years and years. My very first period was very painful - and so it went on for the rest of my life till I had a hysterectomy at 42 - oh joy!

I also had gut symptoms and kept being told it was "just irritable bowel" - "just" my arse! - on the loo ten times a day is not "just" anything - it is hell.

There is a long history of the medical profession dismissing, disbelieving and minimising women's pain.

https://www.waterstones.com/book/unwell-women/elinor-cleghorn/9781474616874

This is a great book on that subject.