I just feel extremely alone and isolated, I’m finding myself sitting alone sobbing thinking of ways I could end my life and a few days later I don’t feel as bad.
My endo journey has been going on for over 10 years and I’m still not at the finish line. I have been prescribed every medication possible and after finally changing my doctor over 6 months ago she said she couldn’t believe I had been left so long.
Every pregnancy I have had has ended in miscarriage, I get the most horrendous left shoulder pain around 5-7 days before the big show and then once that starts I am sometimes left not being able to walk. My muscles completely sieze up which my mum believes is because they are contracting which then means that it can take upto a week to get back to full mobility and this time it felt like I had actually been ran over. Not long after I have actually began to show I get what can only be compared to labour pains which is an over whelming sensation to just push, it’s as if something is blocking my entire lower abdomen and it is excruciating for any kind of bowel release to take place. I’m usually left panting and dizzy because the pain becomes so intense and I have to quickly run and take my tablets because this pain can somtimes be a random big surge out of nowhere. I will probably wake up at some point in the night woth this pain also and have to take more painkillers.
As well as this pain I find that my hormones are essentially life threatening. There have been times I have had to physically stop myself from leaving my house where I have convinced myself to throw myself off the motorway bridge round the corner or to walk to the train station next to it. I don’t have these suicidal thoughts at any other time and my doctor has told me she doesnt think they are related to my period but I find that I only cry a couple of times a month but all within the same period.
I am sorry for this extremely long post but I just don’t know what to do, I’m at a loss with work because my medication is so strong that I find it difficult to string a sentence together after taking them but going without them is not an option. My next gyno appointment is on March 18th where I will be discussing getting surgery and I just don’t know anyone else who has been in this situation and who feels like their periods are destroying their lives. I feel like people will think I’m so trivial about it all but I just need some help at this point. They really need to include endometriosis as an occupational health also!
Written by
HannahGreen
To view profiles and participate in discussions please or .
I know you said you have been prescribed every medication but have you been offered the menopause injections (zoladex or postrap)
I personally can completely relate with the hormones. I feel like one day im on top of the world and then 5 minutes later I have crashed and I am crying in the supermarket because of some tiny insignificant thing. I get told im acting like a teenage and well, I got offered to go onto Zoladex for my pain and had no clue my hormones would be the biggest benefit. I have completely leveled out. My life is back on track. I don't have those bad thoughts anymore.
I feel the worst part about it all with the hormones is that you just feel like no one can understand how you want to not feel that way but your body is completely taking over.
I am really sorry you are stuggling so much. Have you been to a pain management specialist too? I have heard they are pretty good to go to but sadly I don't have one local to me.
Just remember you are never alone and you will find something that works. Trial and error. Took me 15 years to find Zoladex. I am currently off it waiting for surgery and its been the worst 6 months of my life so I can't wait to get back on it!
I have also taken everything under the sun to try and control my endo and I am five months into my Zoladex treatment and I love it, don't know what I would have done without it. Best of luck on the 18th ☺️
Hannah, I wasn't planning to get involved in threads on this forum, but yours came through in a digest and it horrified me that you're feeling so desperate. I really feel for you as I'm low myself with it. Please, please get help rather than resort to drastic action. Please don't feel like you're alone. It's clearly a very rough time that you're having. I'm so sorry. I'm not sure what to say that will give you strength and comfort. I'm a writer, but this time the words aren't coming as they should! Typical. Please know though that even though I'm a complete stranger, I do care and hope that you get help to feel better soon. x
So sorry to read about how you are feeling. You are not alone, even if you feel like that. Have you tried accessing some counselling to help you manage the really hard days? It may give you some coping tools. Do you have a local endometriosis support group you can go to? It might help...
Are you seeing a specialist? You can choose where you go for treatment my local options are appalling so I travel for help to Sheffield (1hr30mins from my home) and they are absolutely excellent there.
I hope that you find something that works for you and that you can access some emotional support to help you.
I looked into this today and theres one of a Saturday morning not too far from me amazingly so I’m going to get in touch with them, i have felt so much better today after getting home from work and sittig down to read all these. Everyone in work had commented on how I’ve just not been myself and my manager asked how i was yesterday and i just burst out crying and that made me feel ten times worse that I was just completely out of touch with what is happenig to my body. For the first time in ten years i can honestly say that I’m slightly excited about this, there’s an entire community out there that i didnt even know existed and im so happy I’ve found it x
Hi Hannah, I'm so sorry you're feeling this way. I'm actually in a similar position - have been housebound mainly bedbound for the majority of the last 2 years dealing with Stage IV Endo, and like you, horrendous issues with hormones and now potentially an issue with my pituitary gland. I have been having dark feelings and feeling completely overwhelmed by everything. I'm like this for 3 weeks of the month and then it lifts for 5 days. I contacted the Samaritans via email on Monday as I'm too scared to talk to anyone. I didn't think my problems were big enough to warrant contacting them as I don't feel suicidal I just can't cope - they have and are being amazing. I would definitely recommend just getting in touch with them and I'm sure they will help you in the same way. Don't suffer alone - know that there is support out there to help you through. I took Prostap injections which are similar to Zoladex - the first 2 months were worse for me and I ended up with long stints in hospital. Month 3 was better but then it wore off by month 4. It is different for everyone. I can't really say what to do about your physical health but I 100% recommend contacting the Samaritans for your mental health - and also to anyone else out there feeling a similar way. Good luck xx
Thank you, the replies off these ladies have been wonderful and I hope that other people have read them and took comfort from them aswell, it wasnt until I read my post back that I realise just how desperate I have been feeling, I have great family and friends but this is one of those topics that you really need to dicuss with other people who have a complete understanding and can relate. Wish you the best of luck and I hope you stay on that even path to coping better xx
You have been battling a horrendous journey up hill and my heart goes out to you. It is not much wonder you feel so frustrated with so many failed attempts to find relief from your suffering.
Your surge pains, which you describe labour like, I have experienced and been told by my gynaecologist that they are cysts bursting and releasing a surge of hormones. It doesn't help with the pain, but I found it helpful to at least understand what was happening to me. I hope it helps you as well.
Many have found a combination of medication and homeopathic treatments have helped. Some can be accessed via the NHS if you ask your doctor they should be able to discuss options with you. Personally I found through some exploration and hit and miss attempts I was finally able to find some relaxation meditation recordings via you tube and a free app on my phone that have helped me to recognising areas of my body I hold extra tension in reaction to pain. Being able to recognise and purposely focus on relaxing these muscles in a safe environment can sometimes help a bit. I also live with my microwave heat pads (on top of pain meds) sometimes using 3 at once. I found some good ones on ebay that are divided into sections so the insides don't all pool in one area when wrapping them to cup different body areas.
Much of this may just be repetitive things you already know and have tried but I thought they were worth mentioning since any pain relief can be better than none, some days.
Ultimately I want to say that you are heard and you matter and I am so sorry you have had to struggle through such heart wretching experiences and consuming pain (mentally and physically). I truly hope you find some relief going forward.
I also urge you to share your mental struggles with your doctor. Many of us here will have been, or currently are, being treated for our mental health as well as our physical symptoms as the two go hand in hand and deserve equal care.
Thank you so much for taking the time out to read and reply to reassure me. I have realised I just didn’t know hardly anything about this, I didn’t realise I wasn’t the only one who’s mental health was as a dorect result of all of his. I can have days where i leave the house and I am literally nust deflated then around 2 weeks later I can be back to my usual self which lasts around a week before i get the niggling aches and pains to temind me whats to come!
I know, there is so much to learn about endo, we've got to learn through our own research (mainly). The single most important thing i can recommend is reading that book, "The Doctor Will See You Now", Author Tamer Seckin M.D. It'll give you courage, excitement, that there is a book to explain what you've been through, plus best treatment explanations. xoxoxo
I really really feel your pain. You are NOT alone. Believe me, take a step back, look at this past 10 years you've done, all by yourself, you are the most amazing woman in this world. The reason why you're still in pain is because its 2019 and this is STILL not enough awareness for this condition, and a lot of Dr's and GP's STILL don't know about the "golden standard" of treating endometriosis. There is no reason for you to be having all the pain medication if you were treated with the "golden standard" for endometriosis to begin with!!!!!! Trust me, The best advice I can tell you, is about one of the worlds best doctors for endometriosis - Tamer Seckin. He's got an EXCELLENT website: drseckin.com/ and an EXCELLENT book - called: "the doctor will see you now", Author Tamer Seckin M.D; You could probably purchase his book off his website, I purchased a hard cover version of book depositry for a reasonable price. He knows every single piece of pain you're going through, he explains it all and he explains to you the "gold standard" way of removing/treating endometriosis. And if you have any questions about your pain, feel free to ring their office. They're based in New York, USA. He's got 30 years experience in hearing about ladies just like you and me, Tamer Seckin has heard 100's of woman just like you. He explains in the book about the Please, I beg you, to purchase this book and you will NEVER regret this. You'll be another woman. I can't wait to hear from you in a few weeks how you've got on
I'm not sure if you have health insurance, however i'd recommend it. It means you'll be able to get private healthcare for any future laparoscopic surgeries for removing your endometriosis, quicker than in the NHS.
Today I had an appointment with a 'natural hormone therapy' place. I'd highly recommend you find one, and they'll most likely be able to give you a tele consult. They actually 'test and measure' the real count of hormones in your Sylvia, and compare the results to where they should be at. I'm probably bad at explaining this, but they sure can measure it all and get your hormones TOTALLY on the right track.
You really need a holistic approach: Woman's Pelvic Physio, Best Gynecologist, Endometrioisis diet, naturopathy is great for this kind of thing (they often mix supplements with good diet), friends and family to help you when you are feeling gross. You'll have to go to lots of different places, not just a GP and a Gynecologist, to get properly better. -Firstly I'd recommend removing all your endo through "golden standard" surgery (where they 'cut' the endometriosis out through deep-excision surgery (don't let them burn it off, you'll be left in years of pain).
-Then once you're over surgery, get to a pelvic phsyio weekly/fortnightly.
-Get onto a good diet asap to calm everything down (paleo is good for starting again, and adding back one food group at a time) best to ask a professional for this.
-Exercise, exercise, exercise.
If you're stuck again, please ask more questions...
All the best, hear from you soon..........xoxoxoxoxo.
Thank you all so much for your replies, my doctor mentioned about the hormone treatment but she said because of my age and that I don’t have kids but do want them within the next few years that she felt the hormone treatment wouldnt be for me. She said it can sometimes take your body a couple of years to fully recover from it and that it could have an affect on fertility.
They gave me an ultrasound on my ovaries etc but she believes the endo is on my muscles which is why I essentially can barely walk because my muscles contract. I have never heard of zodalex but I may now mention it to her because I don’t know how many more times I can go through this, it completely disables me and it’s the mental side effects that basically traumatise me because of how dark my own thoughts are, it’s like having a constant battle with another entity but it’s my own mind that I’m having this huge battle with and I know it will eventually pass but at what cost?
I hate it if i talk to someone i know then they respond with ‘oh i know i get quite bad cramps too’. I could cope with the normal period cramping, in fact, I would welcome that and it just re-affirms that having someone who completely understands it and who completely understands why i feel as low as I do is so important.
I’m so so glad i have found this forum and so glad for all you women who have took the time to read and respond to me x
I'm really glad you've come back online. I've been worrying about you all day. I didn't know it could make the muscles contract and think that may well be the cause of some of my pain. Only just finding out about endo. Had the pain a long while, but no idea what it was until recently. Wishing you all the best with finding progress. x
i didn’t mean to worry everyone I live alone so I had just got myself so worked up and needed to just express myself fully with people who would understand and not just think I was being a bit hormonal which makes me even more reclusive about the whole thing. I think a lot of how im feeling has also been brought on about the fact it has taken so long to actually be listened to and for someone to really consider everything im saying and now im only three different lots of meds I just felt so down about the fact I have suffered so so long with this and may be overwhelmed by it all thinking I will be glad to have a name behind it all but then what am I going to be facing in the future. I’m normally such a happy person but this just completely knocked me sideways. So grateful for all you ladies
I feel your pain! I've cried everyday for the last month! I'm in so much pain and wish I wasn't here anymore, keep smiling! I believe the hormones don't help with the low mood and I have so much anxiety for the future xx
I've only recently found out it may well be this (waiting for laproscopy) after going through endless doctors and specialists for years, so I understand where you're coming from. My reaction has been quite emotional. I've been tearful a lot too. x
HannahGreen and everyone else who feels like you. It's heartwarming to see all of the positive replies. I've felt rock bottom at times due to the endo'. It's been 23 years now and there are still times that those dark days get a bit too much. Remember that everything passes, the pain fades eventually, even if it's just a little reprieve every once in a while.
I personally think that the hardest battle is mental: with the emotional struggle to come to terms with this bloody disease. Equally though I've learnt a lot about myself through the years and I try not to have expectations of what life should be like. We're allowed to feel down, we go through trauma on a monthly if not daily basis! Counselling of some sort may help, even if it's hormone related, it's good to have somewhere you can vent. Gentle excersize too, like tai chi, not so much bending (I find yoga can aggravate the pain with me). Definatly get a specialist so you know that there's a plan for the future but try to just take one day at a time. Most of all don't beat yourself up, what you're feeling is far from trivial! Pain effects everything, It's hard to cope sometimes, so be kind to yourself. xxx
Thank you so much, I have genuinely felt so much better after reading all of these i keep going through them and I’ve even bookmarked it so i can go back to it when i need to xx
I'm so sorry you are going through this. Many of us know what a debilitating and emotionally draining condition this is. Some of us here have also felt so desperate like we cant go on. Please know that it can get better. I was at my worst around 7-8 years ago with every aspect of my life (relationship, job and health falling apart) I felt so low and alone. Eventually I found something that worked for me and I regained my life back. You will find something to get you through it. Stay strong. Also to add I had a meltdown in the hospital waiting room once as the doctor said she had to cancel my appointment and I was in so much pain I came straight home and on to this site and everyone was so supportive it really helped me. It was actually a blessing in disguise as I then got referred to a different doctor. We are here for you. The best thing for you is to get a laparoscopy and get diagnosed. Its awful not knowing. They can then start treating you accordingly. My advice is not to be fobbed off like so many of us were. Its your body and its your life and the doctors have thousands of patients so you have to stand up for you and demand action which is hard when you are feeling emotionally and physically weak but its the only way something will change. Make sure you get the operation and make sure they take you seriously. I wish you all the best and I'm so sorry for your losses. x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Trust me, The best advice I can tell you, is about one of the worlds best doctors for endometriosis - Tamer Seckin. He's got an EXCELLENT website: 
xx
Just back from gynaecologist I give up 😢
I just wish the pain would stop!
I give up. 
How do I get help
Soo fed up! 
