I have been under my local gynae and gastroenterology departments for over 20 years. That’s 20+ years of endless gastro tests for my ongoing digestive issues (I’ve had 2 colonoscopies, 2 gastroscopes, blood tests, fit tests, a scan for bile acid malabsorption).
During those years I’ve had endless gynae consultations explaining my very heavy periods, my very very painful week of ovulation every month. I have had endless US scans, recurring polyps removed via hysteroscopy (4 times) and also polyp removal also via day surgery. I have struggled with anaemia for years due to the heavy bleeding and last year my ferritin levels plummeted to just 3 and I had to beg for an infusion.
Also last year, I opted for a uterine ablation to reduce the heavy bleeding. I asked (repeatedly) about Post Ablation Failure and was assured by my gynae it’s was very rare. Well, 6 months post ablation, typically 🙄, I’ve developed Post Ablation Syndrome and now in lots of pain when my period comes.
So I asked my gynae if I could have a MRI to see what is going on as my gut issues and the pain is worsening. I also wanted to get checked out because my sister was diagnosed with endo after years of gut issues and pain (I have mentioned about my sister to my gynae for the last few years but he never really discussed anything).
Well he comes back this week to tell me he is referring me to the endo team because my scan shows severe adenomyosis and what they believe to be endometriosis.
I am 50 and am struggling to understand how no-one even thought to consider endometriosis could be contributing to my issues all of these years. I now face a hysterectomy which is going to be so difficult as I’ve just become a self employed PA for a wheelchair user, I’d have to be off for weeks (maybe months?).
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rustydog
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So sorry to read this, and I fully empathise. I was tested for gut issues for years. Told again and again it was IBS which seems to be shorthand for "get out my office and stop wasting our time". I went for scans, blood tests and was repeatedly ignored and dismissed. When I had mentioned endo in my early twenties I was laughed at. Even told by one doctor in Liverpool that there was no conclusive evidence that endometriosis existed. I was 20 and in so much pain; I used to pass out regularly and sweat and shiver like I had a fever. I'd often throw up and my blood sugar was all over the place. In my 40s I felt truly terrible again. Gave up my job and returned to my home town. Finally, I was offered a hysterectomy, but when they got in they found stage 4 advanced and "well established" adhesions which have glued my cervix to my bowel and ovary. They stopped the operation and I came round to find that my family of fibroids and adenomyosis now had a new complication. That was September. Since then I've gone private and had an MRI scan interpreted by an endo specialist who spotted it all.
I'm so bloody angry and upset by it all. I come on here every day because I really need to feel 'seen' by thus group of amazing women who are going through this. My mum is dead and I have no siblings so I've nobody to talk to about it. My friends are all sailing through menopause jacked up on HRT, and I'm about to start zoladex which will shut everything down. I feel your anger. I'm 50 too. They completely failed us back then. I was dismissed over and over. I was gaslighted "you seem to want us to find something wrong with you" and treated like an annoying woman who needed to get on with being a woman and dealing with pain. Good luck with everything. I have read and read since my diagnosis and I find it empowering knowing I was right all the time x
I am so sorry you went through that, unheard. It makes my blood boil. I have had decades of the same.
Everything, literally everything is put down to my anxiety. They make me out to be neurotic but I’m anxious because of how I feel physically, I just can’t not get through to them all.
Hi sunset - lady, Could I ask you something….the passing out and severe pain, shivering/fever symptoms was that whilst you were on the toilet by any chance? It’s just I’ve just started being investigated by gynae and I was always like this especially around my periods and I got told I was gluten intolerant. Never thought until recently a lot of my symptoms are endometriosis! Finding all your stories very helpful and reassuring that I’m not actually imagining this nightmare! So thank you, I’m very sorry to read what you’ve suffered though and gone through. It’s infuriating! X
Sometimes yes. My blood sugar would drop like a stone which made me throw up. They thought I was gluten intolerant too; cutting out gluten does help massively. It's sugar that's the main culprit in any form. If I do low carb I am 100% better. I stopped having those symptoms when I changed my lifestyle mid thirties. Started running marathons and quit drink. Peri menopause made everything flare up again x
I’m 49 diagnosed 2 weeks ago we’re testing me for Ovarian Cancer but have severe endo. My consultant was surprised I was not aware of it as it’s bad. I have had painful periods, ovulation, always bad stomachs each time o went to docs just advised to take pain killers try changing diet!! Also get to the point you just suck it up as you don’t want to go with every issue and get any away.
So I’m having an op in Jan/Feb to have my ovaries out as I have a 9cm cyst on one and smaller one on the other. Also my bowel is fused to my uterus so hoping my ovaries are free to take.
Good luck with your op. My sister was the same, had an op at the age of 44 because they thought the mass on her ovary was cancer, turned out she had endometriosis everywhere.
My story isn't the same as you in that I didnt seek help until I was 49. I put up with things until it was beyond copable (bleeding ,anaemia and pain).I've been lucky in that I had a referral to mri after my internal check. I am now on the long wait for surgery and just hope its not so bad that they can't operate.
I have an 18 month wait and now need to have Zoladex while I wait.
I can only be angry at myself for not asking for help sooner but I do feel your pain and anger. I have opted out of bowel surgery now just to get the op quicker. The state of the NHS in England is so dire.
I was the same, don’t feel angry at yourself, we decided to cope and we did. I know there were occasions such as smears that the nurses should’ve recognised something as being wrong but they didn’t. That’s what makes me cross. But who knew things would get worse when we thought it was nearly over. 🤦♀️ I try to tell people to get anything sorted sooner than later.
This is so right. I was not prepared for this now. I thought it would be the end of it. I always tell everyone to push when you're younger. It doesn't go away. The last 3 years have been so hard.
I know, it’s so crazy! It’s not even a lifestyle disease that we could do anything about.
I still think it’s a type of cancer, looks like it, acts like it and they know the cells are similar, might not directly kill you but not all cancer does, damages the organs. The trouble is this isn’t recognised enough that we get any support. Such a shocking system
Don’t be angry at yourself, I think we are conditioned as women to put up with things, we are so much stronger than a lot of men and put up with so much until we are at breaking point. Good luck with your op, I hope it helps.
Hi, I'm so sorry you all are going through this, it's awful being made to feel like this for years. I'm 55 and just been diagnosed with adenomyosis via MRI. My gynecologist didn't even bother to call me with the results! I was just handed a report after coming round from a hysteroscopy and told to stop taking my HRT. No advice! This was 2 weeks after my MRI. I was only having the hysteroscopy because a 5cm cyst in my vagina was picked up from an ultrasound. I too struggled for years with excruciating periods and ovulation pain, one dr told me periods are nothing to worry about they are just like passing water!!!! Yes it was a male Dr. I was passing very dark brown clots, he just sent me on my way! I have no idea what is going to happen now, they said a large polyp was removed from my womb and it was too dangerous to remove the cyst in my vagina??? I guess I just wait for the biopsy results??? I was also diagnosed this year with bad divictularitus, I've been suffering with constipation for years and just been told to change my diet, it was only discovered when I had open surgery for two umbilical hernias! It's been an awful year!
I’m sorry you’ve been through all of that. It makes me so angry when doctors palm us off especially make doctors when they have zero idea what it’s like to experience period pain (or periods in general) and all the issues that come from having faults with our reproductive systems.
I had a uterine ablation last year and opted to stay awake for the procedure. When the wand went in and the burning process started it is very very painful.
The nurse asked me, on a scale of 0-10, how painful it was. I said a 9 and the gynaecologist popped his head up and said ‘Oh I don’t think it’s a 9, maybe a 4-5?’. I gave him a watery smile but really wanted to say ‘Mate! Until you grow yourself a uterus please shut the **** up’ The nurse was giving him daggers!
I imagine there are a lot of women like us who weren't diagnosed earlier but are being diagnosed now as we go into menopause or have surgery. They are much better at recognising symptoms now, and willing to investigate more thoroughly.
It does! My specialist confirmed this. He said it throws it all up again; things flare up again . Peri menopause has been so tough. If one more male doctor tells me I 'just' need to go through menopause!!!😤
The menopause speech! And a lot of friends say your nearly in the menopause. No I'm not I may be 50 but no! Unfortunately it's in my genes to be late. And also the menopause won't untangle everything that's stuck together.
I did, had mine in 2020, first op confirmed in Feb, then hysterectomy in November. Had everything out. Although I’ve started taking HRT I’m not sure I need it.
Diagnosed at 58. Perimenopause was horrendous, menopause has been hellish because of it. Could and should have been diagnosed in early 20’s … It’s a thing.
sorry to hear this hun I saw a gynea person in my 20s they said I was fine bla bla bla only to be diagnosed as having severe deep infiltrated endo at 37 that was this year . Honestly I thought I was going crazy as pain very real and I think they thought it was mental health . I think if they catch it early on it’s not so bad but like you when you suffer for so long it ends up being a whole lot worse. I have the mirena coil but I had to have that as every single month in my 20 s I would see the out of hours doctor as pain so bad was crippled over ever month. Had a pain injection and then I could straighten my body . I’m waiting on further surgery. I can’t believe that they didn’t at first take you seriously as sometimes endo can run in family s as if a sister mother of grandmother has it your more than likely have it also can’t believe you gynea didn’t make that connection. I think I was mad at first for being told it’s Ibs bla bla bla when it wasn’t just Ibs or told I was a healthy person in my 20 s this is why it takes women a long time to get diagnosed . I also grieved for the life I didn’t have growing up as always in pain . Take it easy ok . Xx
I’m sorry you’ve been through that too. I totally understand when you say that you are grieving for the life you could have had, I feel exactly the same xx
Yes I feel sad about how I just felt depressed and exhausted a lot of the time. My teens were very hard. I'm reading a good book "the body keeps the score" which suggests that endometriosis is connected to early trauma. I wonder how many of us this resonates with.
Diagnosed at 40 here! After a lifetime of very heavy painful periods and being told to hush up by everyone including my own mum. 45 now and begging for the consultant to get the planned op done asap - hysterectomy for probable adenomyosis, excision if bowel and peritoneal endo and removal of tubes and ovaries for possible post ablation tubal sterilisation syndrome. Pain is intense and sudden and happening so often now.
I hope you can make the right decision for you. I'm really wary of surgery because despite lifelong symptoms I did not suspect endo aand though they found it during my concurrent endometrial ablation and tubal sterilisation surgery it was still not on my radar til I started having severe pain after the surgery. I know lots of fit active women who struggled with various conditions until they had a hysterectomy. I used to be fit and active.
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