when you feel like your alone and no.one else understands - Endormetrosis 😷

Posted , 2 users are following.

Hi ladie, I'm coming on here as I don't know if it's just me but I don't feel like I'm getting anywhere at all. I've had endormetrosis now for nearly 6 years, and it's now been put down as server. I've had 4 operations last one a year ago. And all times it's gone for like 6 weeks and it comes back, I've just moved to my third consultant now as I just find I'm not getting anywhere. Luckily I had children young first at 18 and second at 19 I am now 25 so for me the only option in my eyes is hysterectomy but it doesn't matter how much I ask and ask they won't because of my age. I am fed up of this taking over my life, I wake up on a morning in pain and go to sleep in pain, how is anyone ment to live like this, it's making me so depressed, I'm now currently on the prostrap injection for the second time last time a few years ago. I feel like I'm a ginepig try all these different stuff for them. They have injected 3 months worth of pro strap into me so I've now got to go through the menopause temp early, my body was never right from last time but I feel like I can argue with them until I'm blue in the face and I don't get anywhere. Every time I have a operation I hear the same thing the endormetrosis has come back so what are you going to do they can never answer me. It's now that bad that's it's effecting my bowels. Where I bloat so bad I look like I'm 9 month pregnant so with my size 8 figure it's very noticeable so get people asking about me been pregnant it's embarrassing. I went back to my consultant last week to be told that I need to try the prostrap injection which I had yesterday. But my argument is why should I try it when I've tried it before so why are they putting me on it again just to waste someone time until they think it's a right age for me to have a hysterectomy. I don't think there is enough support out there at all. You get told you have endormetrosis but I don't think enough information is given at all I have to google thing to see if it's related to endormetrosis or not. With my bloating It's been that bad I've taken myself to a&e to be told I'm constipated I think I would know if I was so ended back at my doctors for them to do test on me to come back and say it's ibs. Ibs is the thing I think they say when they do not know. I know my body and know it is not that at all it's so sad that you can't even go to your doctors and get help because they don't seem to know. They need to have something out there that can help us all suffering. Sorry it's long winded but I've had enough of feeling like I'm alone and have no.one to speak to x

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9 Replies

  • Posted

    My god you have described my life. I'm 31 now and had a full hysterectomy at 29 after fighting for years to get one. I had my daughter at 18. I wasn't prepared for how mentally traumatic the hysterectomy would be. There is minimal support you have to be mentally ready. Unfortunately the endo is back, it crushed me. I was still in agony refused to go to hospital as I thought it's all in my head, thanks to arsewhole doctors. I was rushed in for emergency surgery the endo had my appendix.they found my left fallopian tube severely infected. I now face another surgery to remove it. Theres investigation and complaints. I know how if feels to be utterly alone. I know hysterectomy seems like the holy grail just don't pin all your hopes on it I did. Bring people to appointments with you for back up. Never give up, I found comfort in counselling, mindfulness, meditation, audio books and writing it down. Here if you need it xx

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    • Posted

      Thank you. Oh my god so I hoping that the hysterectomy can solve it when I could just have to live with it for life I'm worrying now that it's in my bowels that I will end up with a colostomy if that's what it's called bag because something is going to happen coz in know my body better than anyone and I know when there is something wrong. I go to all my appointments alone because I think people don't release how serious it is. I have a partner has it's torn us apart we have been together for 8 years so to have painful intercouse to the verge I can no longer do it is just enough for me. I just want it to be over it makes u feel very low and depressed. Thank you for your message back opened my eyes up about the hysterectomy and how it still could come back. But I do feel like I just need to give anything a go. I don't want more children so there should be no right age it's when I'm ready not them in my eyes xx

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    • Posted

      I totally understand that hun, it's how I felt too. If I could go back I would make that decision again. It really has improved my quality in life. It's just a shame it's come back although it's taken two years of consistent complaining to my GP that I was still in pain for it to be discovered. I lost my voice for a while. I've found it now. You know your decision now prepare for it you've got a couple of years to do counselling to fully come to terms with it. Being in chronic pain for years with make you depressed. Get as much support as you can. Read about the menopause really try to understand it. My god the emotions your like a 13 year old teen girl whose a drama student on her period lol the wailing ive had proper dory the fish moments too. X

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    • Posted

      Y'all need to insist, in writing, that they take out everything: uterus, cervix, fallopian tubes and BOTH ovaries. In the letter, explain that anything else will be viewed as docs trying to drum up future business by leaving in damaged parts, so that they'll have continuing business doing surgery on you for the rest of your lives. Tell them you expect to see all the organs they've removed after the surgery, just as with car repairs.

      Unfortunately endo might eventually come back, but it took 27 years for mine to come back after a total hysterectomy at 27.

      Yes, IBS is a scapegoat especially with incompetent docs who don't know precisely what happens when endo grows on the outside of the colon/gut. It cycles while it's there, causing agony and leaving the blood nowhere useful to go, though sometimes it comes straight on through the intestinal wall and out the rectum, with or without stool. It can cause both constipation & diarrhea, and more painful sex because when anything enters either orifice, it presses/compresses yet more painful spots.

      It is okay to tell the doc that IBS is a lazy diagnosis when dealing with women with endo. Yes, some of us have it, but I reject that DX unless and until ALL repro organs are removed.

      It is also okay to tell the doc that s/he is ageist, refusing you treatment on grounds of age alone. Since you've got a complete family, his position is indefensible.

      I wouldn't recommend these tough stances if y'all weren't being jerked around by these docs, but that's exactly what they're doing. Oh yes: they shoukd remove your appendix at the same time because it is so often attacked. Tell the docs that they're increasing both your scar tissue & your agony by all these dinky, repeated partial surgeries. That's downright cruel and inhumane.

      Feel free to show them my message😎

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    • Posted

      I live in England, so am under NHS doctors. I can't afford private although we've tried. You don't get as much of a choice or a say. I changed so many doctors over a long history and poor treatment. I'm in recovery from the last surgery waiting over four months for it leaving me like this. My bowl is attached to my vagina. I'm in such a state most days feel so unwell. I don't have much fight in me. Just trying to get through the days and the nights. The nights are horrendous

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    • Posted

      It is inexcusable for any doctor anywhere to leave a woman in a state where her vagina & bowel are bound up by endo/adhesions.

      I understand about not having the oomph to deal with all this physiologically AND having to be your own health advocate. Have you got anyone, friend, family or coworker, who can take on screaming at the docs?

      Meantime, if the regular doc's don't care, sometimes gastroenterologist care a lot m9re. Have you seen one?

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    • Posted

      Thank you for your reply. Yes i ended up sending a email direct to my consultant because I had just had enough and it's easier to explain over email then to face as I just end up in tears because they just try put something else to try and it's annoying me. She wanted to see me in 6 month so my last email said that I can't cope 6 month and I need to see her asap and I want a hysterectomy as I can't cope wth how I'm feel and living like this for 6 years is a absolute joke I can't do it no longer. So I go see her on 30th august I'm going to make some notes with me to go through so I can tell her everything. Because when your there your so rushed you sometimes miss stuff. I'm going to take someone with me too. Like you say Ive got my family and I wudnt be able to have anymore kids if I tried coz the endo is everywhere. Thank you for your message and explaining what I need to say and what I want removing x

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    • Posted

      Thank you love. I'm going to do what you have said and take notes with me. So I know what I need to say. I don't think there should be a age they can do it. If I wanted more kids I would have I'm nearly 26 my kids are 7 and other 6 next month so I wouldnt have wanted the big age gap. I'm with the same partner too. Having a hysterectomy would be like winning the lotto for me I swear it's that's bad. It's just emotional taking over my life now. X

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    • Posted

      That was brilliant to go ahead and send a email! This is all emotional for all of us because it costs us so much of our lives, and every time doctors pile on more BS, it can come to feel abusive.

      Hang in there!

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