Hi everyone, I have just notice that tonight at 8PM , Kate Garraway has her programme on, where it shows you through amazing technology, what your insides look like. Tonight it is about a young woman with endometriosis.
It probably wont be able to help our pain, however I think it would be really good to watch from a better knowledge point of view.
Also let's face the more endo is talked about on platforms such as TV, the more attention this vile disease gets and one step closer to a cure.
I am sure you will be able to watch it on BBC I player on catch up.
I hope it's a good one
xx
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Lubu
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Just watched. Bloody hell. I’ve had this disease 35 plus years. In menopause now and still having issues. What an eye opener. Poor girl. Fascinating. Just shocked at the surgeons skill. Organs literally glued together. Chocolate cysts like I had. Why. Why. Why? Why are women getting this condition? It’s not a lifestyle choice. It’s not too much alcohol. It’s not not exercising enough. It’s not you had sex too young. It’s not hereditary. It’s not because you’re too fat. Too thin, a woman!!!! It’s not you had periods start early. It’s not just because you’re a women and this what is what periods are and you must suffer!!!!!!! I’ve been told that one liner since I was 17. It’s an effing insult to anyone with a vagina!!!!! No one ACTUALLY knows why we’re all suffering. I would ask why not? Why and what causes this. What causes one women to have this condition and not another? This condition has ruined my life and mine has been MILD compared to hers and many more. Heartbroken for us all because she had that treatment and so many others are in the dark and will not get the answers to their questions. Just like I didn’t all those years ago when I passed out from pain in the middle of a busy main road. Fascinated by that programme, obviously. And yet cried most of the way through. Might take a while for me to calm down……
Well said. Me too, I couldn't help but cry. For her, for all of us. I'm stage 4 and meeting with the specialist in May. I'm stepping into my 40s, so who knows what's in store. As you said, what an eye opener. I need a stiff drink after that...
You are spot on lovley lady!! Our stories are very similar. Its absolutely shocking that NOTHING as far as I am aware is getting done to try and prevent this from happening at the start. We need research and we need a cure to stop it from happeing in the first place.My favourite was.... Are you worrying about anything, anything going on at home?? I think you are a troubled young lady adn this pain isn't actually real. Its manifesting itself as pain but its depression👊👊👊👊. Makes me feel ill thinking back to this. Fast forward 25 years and my life is ruined because no one listened. I even had a full hystorectomy because I was told it would help!! Utter rubbish as I am in more pain now that in my teens.
Yep I cried too but unsure why?? Maybe because if that had happened to me, I might have a life?? I am so happy for that young lady as she is getting rid of it and not waited 20 years until my first laparoscopy when everything was stuck together so much, they could't even make out my organs, nor excise any Endo.
Actually this is really the first time I have been chatting on here and it is actually making me feel better that I can speka to you guys and rant, as you get IT. So bloody unfair, and my heart goes out to you all. Branmledoggy, you need to go on This Morning or something xxxx
I think I would have had a totally different life if I were to go back to being 17 had I known then what I know now. I never wanted children (it just didn’t occur to me to want a family) so I would have made some very different medical decisions. I would have been INFORMED for a start. I’ve asked so many questions about why I had endometriosis and my mates didn’t, but I guess that’s the same anyone asks when confronted with a debilitating disease or condition. My Mum was okay (though did have a full hysterectomy quite young) but she can’t quite explain her pain to me and so I don’t know if it was hereditary, my grandma was adopted so not sure of family history. Did I live too near chemical works, did I do this, did I do that? Why me? I’m going to die with no answers but really hope that future generations finally start to get some. We need to properly throw some money at this, funding research globally on a big scale. It seems bizarre to me that no one knows why so many MILLIONS of women are literally crippled with pelvic pain and so much more. It’s the most isolating disease because of the stigma of blood and tampons and flooding and painful sex and bowel issues that lets face it no one wants to face up to or discuss. Period problems is still a taboo issue. Even my partner of 10 years says “ladies issues” and it makes me want to wallop him with a nearby frying pan!! It’s so flipping patronising. The fact that you were asked “is anything going on at home” says it all. Yes, something is going on at home!!!!! Mainly in my bathroom where I’ve been clung to the bloody bog for the last 12 hours vomiting from my mouth, bleeding from my vagina and diarrhoea coming from my backside, that’s what’s going on!!!!
Oh my gosh. I need to watch it. My Dermotologist took a picture of my back it had 3rd degree burns etc etc and didn’t look as bad as this picture but ……it was from ice to heat to ice to heat to ice to heat 24/7. geeeeeez. I was told this by the surgeon that did Melissa Ethrighe surgery: and she did my second surgery……..that when I had so much pain in my forties AGAIN after two surgeries for endometriosis so far in my life….When I said I’m trying to eliminate things to see what it could be( I’m so stupid or so I thought I had not been told nor did I think to ask that it has roots. And may have come back) that maybe it was coffee. I told her I noticed it was better if I didn’t drink coffee. Her answer “well there you go”.
So I NEVER knew till 2 years ago it has roots. When I went off estrogen due to a dr (that I’m seeing today) 2 years ago freaking out that I was on estradiol……….she told me it’s obviously endometriosis growing back. I flushed the estrogen down the toilet that day/. All pain in whole stomach area has gone away which I’m thrilled for . In my 60’s. Except for my kidneys and back. So I’m going to see her today . 💜I am going to blow off questions and if she rushes me out I’ll be telling her how I will share what she says with my group. So far though she is the only one who told me something that made sense. So I guess really today All I get from her with be a referral to a specialist.
I read a book a while ago that said think of endometriosis as a dandelion in your garden. When you nip off the flower, the flower goes away but the roots just grow another dandelion. That’s how endometriosis is. If you don’t take it out by the root, and eliminate the source, you’re going to end up with a garden filled with dandelions. 😌
Wow. I was never told . Roots. Why didn’t I ask? Or think it out ? For all these years??? I went to the dr today. She is immediately ordering ultrasounds of kidneys and she said we will take it from there. She IS hearing me and I swear I thought slight tears in her eyes. She could (I know) see that I’m truly done with this life of pain. That sounds so victimy . Ug . But true . Hopefully as she said today ……we will get to the bottom of this (or something like that ha).
I want to say “Round-Up” weed killer but I’m being silly! I do know hand on heart that the very very strict endo diets did always help me enormously. Super healthy elimination which basically means following an anti inflammatory diet for a few months. It doesn’t help everyone but it did and does help me. There are loads of good books out there and lets face it, we all know what we’re doing wrong and need to correct it. I hear you about a life of pain and it sounds like you’re on the right track with your GP. Let us know how you get on.
P.S. Best bit of concise info you can read on endo, diagnosis and treatment is described in the new ESHRE guidelines. Google that and read the patient PDF. Print it out and take it with you to any gynae appointments. Some pretty interesting reading if you ask me. X
Yes. Exactly. Or like I’ve just discovered in my garden, the dreaded ground elder. Impossible to get rid of, even with spraying, weeding or digging out at the roots because the teeniest bit left in there and you’re back to square one next Spring….l🤨
Hi I've just watched this programme very interesting and also very scary. I'm currently waiting for the same operation the lady had. Fingers crossed for the same outcome
Hard to know what to say. Just still wanted to type and say best of luck and wish you well. Pretty sure any super skilled surgery like that will be undertaken by the very best surgeon and their team and that has to give you some reassurance. Sending a big hug to a stranger. Nina. X
Just watched this. Shocking. The first episode of this series had a woman with extensive (and that's an understatement) fibroids. Uterus so distended it was visible externally. Also worth watching if you can stomach it. Great that these women are finally getting help but how can the medical system let things get to this stage??? I hope this program brings some awareness.
The medical “system” have no idea what to do with us all, we’re too many and (they are overwhelmed as it is) which is why watching it is so heart wrenching. I’ll say it again and again and make no apology but if this condition were happening to men in such quantities, it would be a TOTALLY different ballgame. (Please excuse the unintended pun)
Totally agree, I even changed my gyne as although he was good, when he said to me, you must have a weak pain threshold, instead of going mental or something worse , I asked to change specialists. xx😂😂😂😂
I don’t know if this is evil or not, or a reflection of my personality, but at my worst and lowest points, I’ve often wished my pain and bleeding on others, not necessarily to be malicious or vindictive but more say to pass the agony on for say, just five minutes, 30 seconds even, just to see what they would do, how they would cope. And I think what is really, really, really hard to stomach, the worst for me, is Jesus…..I’ve got all that coming again next month….even when I was on the pill I could easily have fainting episodes, have to cancel special occasions, and on top of all that, have someone say, “Nina can’t come tonight again, she’s on her period” 🤬🤬🤬
Was thinking of a T shirt for medical appts along the lines of quoting one woman’s remarks from here “ try a red hot poker up your bum and twisting your nuts 🥜 for a few hours and you might understand 5% of the pain we endure “… Not mean really …possibly offering a suitable offering in empathy creation service …😂💖🤬
I watched it to, I have stage 4, my first op was 2011, looking at having a second soon, I'm coming up 48 and peri menopausal. My right ovary pain has been so bad after 5 years drug free I've had to give in and take a form of hormone. Bloating and pain has reduced but I know until surgery has been preformed the Endo is all still there. That poor girl on TV, my heart goes out to her. I pray she gets the baby she dreams of and that her pain stays away for as long as possible. This disease is horrific and no women should have to live in these conditions. Big hugs to you all.
I was really pleased that they were covering endo on that programme as it raises awareness of this life long condition that can affect every aspect of our lives. I’m hoping my friends and relatives watched it as I’m sure they think it’s just painful periods and we should just ‘get on with it’ like they do. They also don’t understand that the disease can return after surgery in many women. It’s so much more than painful periods. The bowel problems, bladder problems, fatigue and depression have had a huge impact on my life. It’s definitely being spokenabout on T.V more recently, which can only be a good thing. Lets hope that attitudes, diagnosis and treatment improves. Hugs to you all x
Yes, great idea, I am going to show to close friends and family as hopefully it will give them a better idea of why it is so painful and the level of pain we experience isn't exagerrated. It certainly gave me a better insight into what has been going on inside. xx
Im thinking, if you try and get BBC I player online, then you should be able to watch it. See the link below. I cant see last nights on there yet, however maybe give it a day or 2 and then try. It should say in the highlights that it is about a young women with endometriosis and a man with kidney stones. Try it and let me know xx bbc.co.uk/iplayer/episode/m...
Was lucky enough for this surgeon to do my op and yes he is as understanding and skilled as seen. Clearly this poor woman was in extreme and unbearable situation and it’s good to see this upfront and square on for all kinds of reason. A note of real caution here though. Staging can be a bit of a double edged sword : without underestimating it’s importance isn’t a good indicator of the degree of pain, inflammation or metabolic disruption that any stage of endometriosis can cause. The issue with the remit of this programme ( and it was extremely good at what it covered) is this is the visible end stage of the disease only and is a thin slice only of what is Endometriosis/Adenomyosis peeps endure. It’s a start and we need a lot lot more.
It’s great that there’s endo specialist’s like him now. They didn’t exist when I was first diagnosed by a general gynae consultant. It was as if they’d operated on you and now you were cured. They didn’t believe me when the pain and other symptoms soon returned. The lady on the show had adenomyosis too (which it turned out I had as well) but they didn’t discuss treatment for that. Maybe they just wanted to concentrate on the endometriosis. Plus the only treatment for adenomyosis is removing the uterus and that wouldn’t have been suitable for that lady. Anyway, at least it highlighted endometriosis as the serious disease that it is. My elderly Aunt has just called me. She saw the programme and was pretty shocked at the images and surgery. I think she might understand now what I’ve been going through for the last 30 years!
It’s such a shame that it’s only when there is so much more public sharing that people begin to become aware of just how awful it is. There’s a whole raft of conversation that needs to take place around the effects long term of treatment protocols and my pet peeve the management of endometriosis and adenomyosis during the peri menopause, menopause and beyond. It’s no picnic and for many menopause or hysterectomy is not the end of the matter.
Tell me about it! You think endometriosis and adenomyosis are bad and then you have a hysterectomy and a surgical menopause with no aftercare whatsoever. No information on menopause, no HRT. It’s been a horrific and terrifying experience. It could have been completely avoided if I’d been given my hormones back after my op. It makes me sad but also very angry, especially as my story is not unusual and many women are just left to suffer.
Yes, yes, yes. I had this all my life but yet when peri menopause kicked in, I had nowhere to go apart from being offered HRT which in my book was offering my body even more oestrogen which from what I can gather is the “cause’ of my issues….why would I take more, even when combined with progesterone? I don’t believe enough research has been done into ladies like us, it’s almost like we’re entering into a new era of misinformation. My gut instinct being older and wiser was a firm no thanks. I’ve had 35 years of pain, menopause bring it on. Pain free but now abnormal bleeding which I now need to rule out gynaecological cancers. Brilliant! 😏
My menopause has been horrendous. After years of thinking that oestrogen was my enemy I now know just how essential it is to our physical and mental health. I became so ill without it that I was suicidal. As long as we take progesterone HRT as well as the oestrogen it helps to suppress any endo. The progesterone has actually helped my pelvic pain. I realise now that endo is not affected by having too much oestrogen, it’s affected by other hormones being too low creating a hormone imbalance. I wish I’d been given body identical progesterone years ago as it might have helped. I’m on body identical oestrogen too so it’s very safe. I’d definitely recommend replacing your oestrogen to protect you from heart disease, osteoporosis and dementia in future x
Oh gosh, that’s fascinating. I just don’t know what to do. I always assumed oestrogen was the enemy? Even staying off soya. I’ve been told I’m oestrogen dominant. So of course it would make sense to stay away from it. It’s funny, I’ve got major problems now at 51 with hip pain even though I’ve walked 30 miles a week dog walking all my life . I’m now worrying my endo has spread to my hip, even though I’m pain free. And maybe it’s osteoporosis. What a flipping minefield. 😟
Ah, my hip and back pain got much worse within weeks of my hysterectomy. First I though it was from the op and had a load of physio, which did nothing. Then, because some pelvic pain returned I just assumed my hip and back pain was endo related. Other symptoms gradually appeared such as more joint pains, headaches, itchy skin, insomnia, irritability, low mood, no energy, no interest in life, bladder problems, tinnitus, dizzy spells, memory problems, poor concentration. I didn’t join the dots but that’s partly because nobody tells you about all of these possible menopause symptoms. They only mention hot flushes! I struggled on until my hormones completely crashed one day and I honestly felt like I was dying. It floored me for 3 months. The penny eventually dropped and I started HRT. My hip and back pain has nearly gone and my other symptoms are much better. I’m still tweaking the dose. What I’m trying to say is please don’t wait before starting HRT as menopause symptoms can suddenly hit you and the mental symptoms are very scary. Take a look at the Balance-Menopause website for lots of up-to-date info and great podcasts. There’s a podcast with Dr. Chris Mann about endo and HRT that’s informative. Sorry for the long post and going off the original subject!
No it’s fine. I’m delighted we can all talk about all this. I just find it all very, very confusing and I’d like to think I’m very, very well read and informed. I think I’m stoic and from Yorkshire and built from the strong stuff that is saying PHEW your pain is over girl. And I can tell you I’ve had pain. Climbing walls, literally climbing bedroom walls to escape the pain. So now I think, there’s no pain you just can bloody well just get on with the 26 menopause symptoms and there’s hardly any info there for women like me. I’ve been on the Balance app, e-mailed Louise Newson (even she admitted not enough research done between endo and HRT and uterine cancers. I’ve been moulded into cynical, but maybe time now to explore some hormonal,options. I dunno. Just trying to stay on the planet for as long as I can! 😀
Yeah, we’re certainly used to pain. There’s so much misinformation and conflicting information out there. The Balance-Menopause website is better than the Balance App because there’s loads of articles, podcasts and personal stories. The HRT risks are with synthetic progesterone (they are in the combined patches and combined tablets) and there’s the option of body identical progesterone these days called Utrogestan. As long as you take that in combination with he Oestrogen HRT your uterine lining is kept healthy and any endo is kept at bay. Body identical HRT is a copy of the hormones we make naturally and it’s from the yam root. All we can do is research the facts and make a decision that we’re comfortable with. Best wishes x
To all of the above ditto. It’s a question of the right balance for the individual- excess and deficiency aren’t a place to be to sustain wellbeing. The Newson Clinic free app Balance has lots of resources to explain both the menopause and in relation to HRT. Even then I’ve found it essential to find the key nutrition and pelvic rehab ( not kegels as it only tightened the already over tight pelvic floor ) Not enough oestrogen I get really low, too much progesterone ( even body identical!) I get darkly depressed even though it manages bleeding. That’s when we’ve ended up knowing that the adenomyosis needs likely management with surgery. Mental health becomes the priority. The dialogue around hormones being the bad guys isn’t terribly helpful really. It’s the balance and how it affects the whole and where the pathway isn’t working how it ought that needs far more research and understanding. Oestrogen, progesterone, testosterone with all the other hormones aren’t just added extras they are essential to good body functioning and welfare. Treating them as “well we’ll just switch em off and that will sort it “is a blunt short term proposition in my experience. I look forward to the day when this whole shebang can be understood and managed in the round instead of this plugging the sinking boat approach.
Awww , have a look at other options if understandably you are steering clear of the HRT . Shouldn’t have to suffer the menopause like shouldn’t have to suffer the endometriosis. Too much suffering makes us poorly women 😘 Lyma have some useful info in relation to supplements when can’t or choose not to do HRT - whether you use their product or not. I swear by good quality Omega 3 ( EPA and DHA ) for a lot of the menopause symptoms as well as pain overall - there’s alot of trialed material out there for this with massive positives for endometriosis, menopause and inflammatory conditions and related depressions so feel it’s a sensible option for the lot. None of its a whole answer but I’ll take decent gains where I can TBH. After a lifetime of pain with the endo etc frankly a lifetime of menopause crap for the remainder and ensuing consequences fills me not with joy. We deserve our time in the sun peeps !
I am finally having my first laparoscopy next week - really want to watch this but might wait til afterwards?! Feeling a little anxious now it's close and don't want to scare myself more! And just wanted to say thank you all for sharing your experiences and advice – I've been quietly reading for months now, but only started posting today. Reading your stories has made me feel less alone whilst waiting for treatment and given me more knowledge than any other resource, so thank you.
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I am doing a charity Swim/run/walk and jog for Endometrosis charities.
Advice 8 days post lap
Severe hip leg and back pain
Laparoscopy tomorrow, feeling nervous now
