I’d never heard of endometriosis in my teens. Or my 20’s. And barely heard of it in my early 30’s. I was diagnosed with stage 4 endo at 35 years old and at the peak of my career. And now, faced with the reality of TTC, it’s crept back into my life again.
Do you ever ask yourself “How did I get here”? Did I work too much? Drink too much? Indulge in the wrong foods?
Endo is a journey, and an affliction that is now front of mind each day. I’m so glad to have found this forum.
I’d love to know - how do you cope?
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VMJ007
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im 47 and im sure its got something to do with are age.....hormones going into overdrive for one last time!! hope your keeping as well as poss take care xx
Just waiting for decisions to be made. Keeping fingers crossed there will be an update this week. I can rule out drink being a cause, don’t like the taste 😂
I'm waiting to see a specialist bowel surgeon endo all over causing lots of probs just don't want to wait too long pains are getting worse and I'm scared its causing more damage the longer I wait. Was going to go to AE but there's no point I need to be seen by specialist endo surgeon.
I wonder if being on the pill from an early age for well over 10 years might of made things worse but then I went on the pill to help with periods and pain.
Similar circumstances, plus fibroids, etc. Waiting for them to have endo MDT meeting. The consultant I’ve had isn’t directly part of the listed team, but he knows what he’s doing. I did tell his secretary that if it speeds things up I’ll pay to see the other consultant. I keep paying out though.
It’s one way to lose weight, I can now get into a size ten dress! (Was 16/18) 😂
It's not the best way to loose weight but I know what you mean I lost 2 stone. good to know you've got someone who knows what there doing but unless you've got the money to see things through to the end we'll always get stuck in the NHS que at some point. xx
I'm 48. Stage 4. Diagnosed (offically) 1 month ago. In and out of hospital all my life. Had ectopic rupture at 27. Had vaginal hysterectomy at 29. Had several laps to repair damage caused by laceractions from tubal ligation clip "accidentally" left in abdomin. I've always had PCOS, I'm auto immune, RA and APS. I've been "menstruating" from endo from my bowel for several years. Yet Drs have only just connected the dots. Did I forget tethering?!?... oh yes bowel and ovary are tethered, lol. I'm on Zoladex 3 weeks now (no HRT, because that would be counter productive). I'm actually in better spirits now I have answers, although hormonally unbalanced (forced menapause). Well that's me in a very basic nutshell. I won't mention pain... but you get the drift. Stay positive and do the best you can to be happy as endorphins are the best pain killers I've ever tried X
Hi VMJ007. Like you, I knew nothing about Endometriosis, barely knew the word.
Like Moommaiden, diagnosed at 51 despite numerous, varied, various and painful symptoms over 10 years. I feel that the GPs knew what was going on and waited that I reached 51, the official age of the menopause in the UK. After my first lap in Sept 2018, I was feeling really unwell, I was not told I had endo, so could not understand my various pains, I was practically kicked out of the hospital on a wheelchair, I had difficulty keeping my eyes open and was sick in the lift. My husband and our son were doing the nurses' job, I was classified as Outpatient, therefore, no help.
The word endometriosis was just mentioned at the follow up consultation 4 months later, he didn't explain what he did during surgery apart from investigating (I think he did ablation), I was already in dépression due to the constant pain but, ignorant, ashamed, I didn't mention it. Finally, I did my research, joined this group, had a massive flare up while at work, had to go home, I was knocked out with the pain for 3 hours and then went back to sleep. Had a consultation with my GP the following day, 5 months post lap,. When I explained I had been diagnosed with endometriosis, the GPs reply was :for endometriosis, there is nothing to be done as you are close to the menopause '. The only problem with his comment was :how did he know that I was close to the menopause as he never mentioned once the word perimenopause in 10 years of symptoms and suffering?
Hence, the reason why I think GPs play a dirty game with women' s health in order to save monies. They certainly have done so with me!
What causes endo with us, older ladies? No need for guilt trip! It's all in the hormones! It's called perimenopause, the word that GPs don't want you to know. Perimenopause causes hormonal imbalance where the progesterone drops and, consequently, the oestrogen is unopposed and becomes dominant. It causes an array of symptoms, endo being one of them. Progesterone helps keep the lining of the uterus thin. I think that this drop in progesterone exacerbates the already existing endo that then grows quicker, everywhere inside us.
This is how I understand it, please feel free to correct me if I am wrong.
Our Western diet rich in processed food, sugars does not help, nor our lifestyle (sitting for hours at work for example I did it, but I have to work, so what do you do?). I don't drink, I don't party, so not guilty, at least a couple of sins off my conscience🙄.
I took charge of my medical care and on the endo warriors' advice, I put myself on an exclusion anti inflammatory diet free from :gluten, dairy, soya, chocolate (contains both milk and soya), caffeine, dry beans, brown rice, apples, tomato purée, hot spices. I also have IBS-D associated with it and the legendary interstitial cystitis treated by GPs with antibiotics that gave me secondary infections, they never sent me for a laparoscopy until I requested one in June 2019 following 3 cystitis in barely 3 months. The lady GP initially refused it as she explained that it was the surgery's policy to refuse cytoscopy to all menopausal women. When I was younger, they still refused it, so what is the REAL reason for blocking medical care to women?
My main regrets in all of this is having worked long hours, thinking I was really brave when I was unwell, not being informed, and the biggest of them all, feeling that the GPs laughed at me, at my symptoms, my confusion for 10 years. That really hurts! I made the mistake of trusting them. This has been my main mistake. The GPs will get away with it. I am not. They don't even acknowledge the letters of complaint, says it all : are they scared? As for the hospital, they are covering it up.
On a more positive news, I am recovering from excision surgery at a different hospital, BSGE Centre, where endo was found a bit everywhere and excised by an experienced excision specialist.
It is a shame that I have had to go through so much physical and psychological pain. If I had waited on the GPs to help me, I prefer not to imagine where I would be today. When I took charge of the situation, things worked and moved on.
My focus now is to recover well, this is my job, the surgery was quite extensive and I have no intention to rush to work, that's for all the years when I pushed myself without any medical care, malformations and climbing endometriosis associated with medical negligence. I still carry on with my exclusion diet and complements. I am not rich, (alas!), I do think about work but will return when I have received the correct medical treatment and when I am well at all levels, downstairs and upstairs. The whole thing has been a massive shock, not least the nastiness of the GPs.
I read somewhere that endo can cause burn out. Maybe I also have this, but I will never know for sure because the medical corporation doesn't want to know about this, above all when it's about women's so-called problems.
I am very grateful and lucky to have found this group where endo warriors have provided me with the knowledge and support about this disease and offered me a toolbox from which I have used the tools to tame the beast. 🐲🛠️😊
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