Enough is enough... I can’t do this no more.. ADVICE please!

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ENDOMETRIOSIS, ADENOYMIOSIS, IC.....

I am day 9 of a flare up. I had excision in August and buy October I was sympathetic again. They gave me another 3 injections of prostap (Lupron) which really helped. My last injection was mid April. I am really suffering right now. I have so much pressure which feels like my organs want to just fall out of me and no medications are helping at all. I’ve tried heat packs and ice packs, tramadol, ibuprofen, paracetamol and gabapentin and I’m grtting no relief. I had the Mirena fitted in August during my lap. Gynae sent me to pain management who told me I have to get over it and try and live my life which I am doing every single day but these flares have me rocking, crying, sweating and vomiting with pain. I go so faint with them and Doctors aren’t helping and gynae discharged me after my 3rd consultantation since August. Every time I see gynae they discharge me the same day. What can I do!! My GP won’t refer me back in because the consultants won’t operate again they just said pain management but I’m trying everyone. Light exercises, healthy eating and mindfulness. I just cannot deal with this no more. I’ve spent 10 days signed off sick from work because I’m getting too faint. 

Please any advice would be great what can I do? I can’t go private without a referral and I’m doing everything at home that I can. I have 4 ovarian cysts as well. I am just in so much pain I feel so trapped and isolated and I feel so alone because family just do not get it! Any advice on what to try.... no CBD I got too sick from it as my body is quite sensitive 😭😭😭😭😭😭 I really cannot deal with this no more! It’s getting too much

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  • Posted

    Sorry you're suffering so much, Amy. I had a very similar journey -- started with ovarian cysts every other cycle (horribly painful!!) and then Endo (Surgically confirmed) and adenomyosis (sp?). My cure = hysterectomy at 44. 

    How old are you (if you don't mind sharing)? 

    Unfortunately, even with strong RX pain medicine, many people still feel the pain - the meds just make you so drugged that you aren't so anxious about the pain (which relaxes you and the pain does ease up because you're not so tense). I never felt full relief from RX meds - it just took the edge off.

    The Lupron was great -- but my HMO billed me at $2,100 for each shot (!!!!) and my co-pay was $500 each shot ( !!!!!!). Needless to say, I was only on Lupron for 2 months. I had already scheduled my hyst - I was just doing the Lupron to make my Dr more comfortable giving me a hyst. 

    I went to pain management for a different condition and I didn't find them helpful either. All they could offer were classes and alternative therapies (acupuncture, chiro, etc). I took the classes figuring they would suggest helpful, proven therapies for chronic pain. Nope. It was basically two social workers suggesting things like "Try to wait longer to take you next dose of meds"  OR meditation, exercise, diet changes, play with your pet, etc. The entire class basically consisted of the social workers telling the patients to suck it up, learn to live with it, take a walk, call a friend, etc. The best thing about that class was that I met other people suffering from chronic pain and suddenly, there were other friends who truly understood chronic pain. There were people in these classes who had been forced to stop taking pain meds they'd been taking for years with no problems because their Dr stopped RX the medicine. One woman had been on a low dose RX med for over 10 years and suddenly, her Dr forced her to taper off. Now, she's suffering needlessly. I'm in America and there's basically a war going on here with the opioid crisis. Lots of people are Od'ing on pain meds so everyone else has to suffer. 

    Hysterectomy was an excellent cure for the Endo/Cysts/Adeno. I had a surgical complication that made my recovery slower than expected - but as soon as the complication healed, I was good to go. Honestly, were it not for that unfortunate incident, my recovery would have been a cake walk. I can tell you that I was feeling little to ZERO pain from the hyst after only 3 days at home. I read that many women feel almost 100% after two weeks from Hyst. It's a much easier surgery now. 

    I hope you can find a Dr who will listen and really work with you to find the right therapy. Don't get discouraged -- they have lots of hormonal treatments to offer. You just need to find the right therapy.

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    • Posted

      Thank you orb your reply. I am 26 but the gynae I saw a few weeks ago said he won’t do a hysterectomy for another 10-15 years in case I decide I want a family. I’ve heard a few people say that they’ve found relief after a hysterectomy. I’ve been told that even a hysterectomy won’t cure my endo because it’s not just on my pelvic region it’s on my bowels and pelvic wall. It will only help with adenoymiosis. I have made an emergency doctors appointment for this afternoon because I cannot take it much longer. I have tried several birth controls which all caused me migraines so I am very limited to what I can have but I will do anything and try anything. I’ve been told to try an injection called zoledex which is similar to Lupron. I really really liked Lupron. My life got so much better after the second injection the pain just went it was amazing. It’s just coming off it I’ve found my pain is so much worse. It’s not just a few hours a day. I have a constant full pain that is always there. It’s noticeable cramping then every day I’ll have sharp pains down one side. Then when I’m having a bad flare like this 9 day one it feels like so much pressure that my organs feel like they want to be pushed out of my vagina (sorry it’s the only was I can describe it) I get contraction like pains and I’m curled up sobbing from the pain. That’s lasts a few hours. I’m just hoping that this family Doctor that I am seeing at 4 can help it’s an emergency appointment so I don’t get to pick and choose who I want to see. I am going to ask.. no I’m going to tell them that I want referring back to gynae to see the consultant who done my op and I want his opinion on things. We know it’s back but it’s trying to manage it. I’m struggling and it’s effecting my mental health so much I can’t handle it. Thank you for your message and I am so glad that a hysterectomy has helped you 
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  • Posted

    Thank you orb your reply. I am 26 but the gynae I saw a few weeks ago said he won’t do a hysterectomy for another 10-15 years in case I decide I want a family. I’ve heard a few people say that they’ve found relief after a hysterectomy. I’ve been told that even a hysterectomy won’t cure my endo because it’s not just on my pelvic region it’s on my bowels and pelvic wall. It will only help with adenoymiosis. I have made an emergency doctors appointment for this afternoon because I cannot take it much longer. I have tried several birth controls which all caused me migraines so I am very limited to what I can have but I will do anything and try anything. I’ve been told to try an injection called zoledex which is similar to Lupron. I really really liked Lupron. My life got so much better after the second injection the pain just went it was amazing. It’s just coming off it I’ve found my pain is so much worse. It’s not just a few hours a day. I have a constant full pain that is always there. It’s noticeable cramping then every day I’ll have sharp pains down one side. Then when I’m having a bad flare like this 9 day one it feels like so much pressure that my organs feel like they want to be pushed out of my vagina (sorry it’s the only was I can describe it) I get contraction like pains and I’m curled up sobbing from the pain. That’s lasts a few hours. I’m just hoping that this family Doctor that I am seeing at 4 can help it’s an emergency appointment so I don’t get to pick and choose who I want to see. I am going to ask.. no I’m going to tell them that I want referring back to gynae to see the consultant who done my op and I want his opinion on things. We know it’s back but it’s trying to manage it. I’m struggling and it’s effecting my mental health so much I can’t handle it. Thank you for your message and I am so glad that a hysterectomy has helped you 
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  • Posted

    Hi Amy - Your Drs have suggested Zoledex? Is there any reason they can't try this now? You need urgent relief. You have to be your own advocate for health care - I'm hoping the Dr you saw for the same day appointment was sympathetic. 

    Endo pain is horrible, I know. Ovarian cysts also feel like a party in your guts. One of the better OBGYN's I saw on my own journey described Endo pain as if "someone has dumped hot coffee all over your abdomen". She was right. Pain in the ab, pain in your back, sometimes pain in my legs. 

    My endo was also on the ab wall and in the cul de sac too. You will always have hormones, even after menopause and/or hyst which is why you'll always be at risk for return of the Endo. I had 3 opinions and asked them all a set of questions to help me decide if I wanted a hyst. One of my questions was "How many patients of yours had endo symptoms return after a hyst?" - they all said NONE. Obviously any of us are at risk or any number of issues, no matter what we do. But it's not common (my understanding of it, anyway).

    All that said, you're young and I can appreciate why the Dr refuses to give you a hyst. On the other hand, I don't know how you can live the way you are right now. I do think you have options that they haven't tried (hormone treatments or other drugs like Lupron). 

    Why can't you continue Lupron treatment? Had you already had it for the 6-9 months? I remember something vaguely about only being able to use it for a short period of time..

    Don't give up hope. This won't be forever, I promise. Let me know how your emergency appointment went. 

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