possible endo and debating on hysterectomy

I have suffered with pain for nearly two years now. All started with having a loop excision done and thats when the pain started. Had a scan done and there was a 7cm cyst on the right ovary, looked 9months pregnant and was very painful and i didnt have an appointment to see the consultant for two months later so had to beg the hospital to remove it after going the a&e numerous times in a month and in the end they did and removed four cysts two 7cm and two 2cm two on each ovary. Pain still didnt go away and ended up back in surgery 10months later to have another two cysts removed one on each ovary 5cm. Again the pain still didnt go. I had come off the pill after the first surgery and got and ius fitted to see if that helped the pain but obvisiously never. After the second surgery had another scan four months later to see if the cysts had regrown but luckily they hadnt but still in really bad pain. So i got put on prostrap injections for 6months to determan whether it is endometriosis or fibroid. They do tend to work for the first 3weeks but in the last week when i was duethe next injection the pain would come back getting worse each time the next injection was due. Just before my six injection which i had on monday was the most painful week looking 9months preganant again, couldnt walk, it hurt to sit, stand lie down and painkillers dont seem to work, so ended up in a&e and having morphine which didnt help either. They did a scan and nothing shown up and just told me to go for my next injection, which i did and the pain and swelling has gone again. I just dont know now whether it would just be easier to have a hysterectomy because i cant cope with pain anymore and i am now dreading having the pain come back in just over two weeks and i dont see my gynea til next month. I did want kids but i dont want this pain to continue any longer. So do other treatments work or is a hysterectomy the best option?

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  • You do have a lot going on and I am so sorry. I don't know your medical system but it seems you need another opinion. If you are sure you do not want kids and you decide to have a hysterectomy I have a suggestion that may sound strange but hear me out. IF they can't do your hysterectomy via a laproscope ask them if they will do it vaginally. I know it sound counterintuitive but MANY woman, over 90% of woman who have "open" GYN surgery aquire adhesions that can have a extremely poor effect on your quality of life, for life. Not everyone does but when the "female parts" are removed medically the GI tract "hangs" and I quote from a doctor "most people just have the GI tract hang there but people like me, they get stuck to each other and/or the wall of the abdominal and pelvic cavity". He said it to me with a cavalier attitude and years later the adhesions are still having a huge negative effect on my life. Please just don't jump into anything, remember you are your best health advocate. Good luck

  • Thank you. Sounds really bad what your going through! Isn't there anything they can do for you? I had an open cut with the first surgery an it did leave adhesions but they removed them with the cysts in the second surgery which was keyhole and I've had no more adhesions thankfully. It does get you get down and you feel like you don't have much of a life and plus it affects work aswell.

  • Jroo thank you for your empathy. My only choice at this point is "key hole" surgery WITH a good barrier product and a surgeon with a good record. Because of my "total hysterectomy" years ago more GYN's that you would imagine just tell me no, can't help. These are one's that have the knowledge and barrier products. It REALLY ticks me off because GYN's are surgeons who started this "merry go round". I did get a name of a Dr. Cook that looks like a possibility and actually takes my insurance which would be very helpful. I got the name from this site and don't know from who now but THANK YOU for sharing.

  • I hope everything works out for you! The gynea I see at the moment he does seem really good and he's one of the top ones where I am. He did keyhole for my second surgery removed the cysts and adhesions plus wants to help whatever way he can. Every other one I've seen Just come out with any story and confuse you but I do like him.

  • I've started to do a bit of dr google research on pelvic neuralgia.

    the muscles and nerves in this area can be the problem.

    its fascinating how the brain perceives this problem even after the culprit cyst, fibroid,has been removed.

    I've been having pain for over 3 years and thinking I need to understand whats going on, as my specialists don't seem to know.

    I'm amazed so few doctors specialise in this subject.

    there are even some exercises to help.

    tryptosol helps pain but makes you sleepy.

    I would also recommend good quality vitamin b comlex taken early in day.

    read about b12.

  • Aww thank you. I will do thanks. The specialist I usually see is really good and is one of top ones in my city and I do usually get answers off him. It's when ya go into the a&e and ya see different ones they start telling you different things. I had one say I needed a hysterectomy straight after me second surgery but my own consultant/surgeon said no an have these injections to make sure its ovaries and then it could be endo or fibroid. If the pain didn't go away at all while I am on them then it's not my ovaries it could be my bowels or something else. I will give what you said a read thank you

  • Look into pelvic wall nerve pain. Google Dr Lee Dellon and read his free chapters on his website. I had referred nerve pain that went unnoticed because obgyn won't look into that. I had a partial hysterectomy; worst decision ever. Nerve pain is worse; I have pelvic floor dysfunction now which I didn't have before. My bladder and bowels are messed up and sex hurts.

  • I will do thank you. How do you find out if it's nerve pain?

  • Peripheral nerve surgeon. A urogyn maybe if you mention it. I've been better with topical ketamine and suppositories with Valium and gabapentin.

  • I wonder if it'll help me. I go back the middle of May and got a scan the end of this month so I will see what says about everything and I will mention it thank you. I was just thinking that the pain would go if I just had a hysterectomy with the pain going away with the prostrap after having it since it shuts the ovaries down,

  • Hi pepper

    Could you please tell me where you apply the topical ketamine? And is it helping you?

    Thank you so much!

    Diane

  • On my tummy and sacrum and yes it helps. You can also get it compounded in a suppository

  • Hi again!

    I have a topical combo of clonidine 2%/ketamine 10%/gabapentin6% to put on vagina but it burns. Do you know what percentage your ketamine is? I'm wondering if I could use this on my tummy ? Pepper, what symptoms do you have again?

    Many thanks!!

  • I have lower left abdominal pain left labia and left side uretha. My suppository is 120mg gabapentin; 10mg Valium and 50mg lidocaine. They do help me. I also have lower left sacrum pain.

  • Hi Pepper,

    Sorry you have all that pain. 😔Thank you for your info on suppository, that sounds like a good one! What is the % of ketamine that you put on skin? How long have u been in pain?

    Thanks, I really appreciate your info!!!

    Diane

  • 2% mixed with other stuff. I've been in pain since 2008 but it was very bad after my hysterectomy. I had the hysterectomy in 2012 for Endometriosis and in 2013 the

    Nerve pain was in full force and has been that way everyday since.

  • Thanks Pepper. It sucks that we must live this way. I'm sorry. Where do you live? It sounds like you have a good doc that is willing to think outside the box to help w your pain. I've done some calling around and all I get is that Valium can't be vaginsl only rectal. After 8 very long years you'd think they figure something out. I'm glad that with your meds you are getting some relief. Are you able to sit/drive? That's my biggest pain area. thanks agsin Be well. 😊

  • What?!!! Yes it can be vaginal!!!!! Do you have a compounding pharmacy? Call and ask for help! Look up the pudendal hope closed Facebook group people might live near you and can help. I live in Denver, CO where are you?

  • Hi! I thought it should be possible!! WTF! I'm going to email my doctor tomorrow. I'm w kaiser and sometimes I think they don't think outside the box. I live near SF, CA in Burlingame. I've seen Dr. Payne at Stanford and several others to no avail. I'm not on Facebook but maybe I'll sign up just to go on the prudendal hope you are suggesting. I'm so glad to hear you are feeling better, that gives me hope as I'm pretty much house bound bc I can't sit, ect. I'm going to start w your suppositories. Do you know what else the ketamine is mixed with? My urologist is really good about prescribing things if I give him the details. If they are helping you I must trythem. Thanks agsin Pepper! X

  • Yes you can try on tummy. Ask Dr but I would think yes.

  • Do you get that off the surgeon or can you get it from a chemist?

  • There is a procedure dr can Do to cut the nerve to the uterus to cut off pain. Presacral neurectomy. Removing the uterus is a bill deal. I'm only telling you to explore your options because once it's out it's out. Surgery will always be there honey just be certain its what you want.

  • Hopefully something like that would work. I think the pain clouds your judgement doesn't it and you would do anything just for it to go.

  • Honey you are so right about pain clouding your judgment at times. Just make sure what ever decision you make take your time. I will add, any open surgery is an invitation for adhesions, try very hard to have keyhole or vaginal surgery if you go that route. Best wishes to you and good luck.

  • Hysterectomy may give you short term relief, but the loss of internal supporting ligaments can cause long term prolapse problems. I had mine age 30 and at age 40 had prolapse repair that caused pudendal nerve damage. Very personal decision, not saying it's wrong, just be sure it's the right decision before doing anything. Don't swap one problem for another one later down the line. Wish I had been better informed at the time, but I saw it as my only hope. Take care.

  • I dunno how much longer I can cope with this pain! Two weeks since the prostrap finished and my stomach is looking 9months pregnant again and the pain is unbearable! The painkillers I've been given don't even work. Had another internal scan done the other day and that nearly killed me the pain especially when they was moving my ovaries with it. How I'm going to even last another month until I see my consultant I don't know.

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