anyone diagnosed with nerve pain due to endometriosis scar tissue?

[_hope]

Hi all, just be told by gp that pelvic pain I have is due to endometriosis scar tissue on nerve, wandering if anyone has experience of this?

[cuddlybear]

Hiya...am the exact same,the pain is so excrutiating and suffering with it for 2yrs now.....I find wearing support stockings really help....,I wear them for 3days and take them off for a day and back on for another 3days,also got into the habit off puttin my feet up whenever I sit down....my husband gives me a massage twice a week which also gives me a huge relief and then d painkillers,am on a lot of them bt the one I take for the nerve pain is Amytriptyline,am taking 50mg a day and it works for me......hope you feel better soon and get some relief x

[_hope]

thank you, sounds like you are really suffering. I have been given amytriptyline, also told to continue diclofenec which I'm already on. This morning I went to urgent care because a lump has come up at my main incision site from hysterectomy 4 weeks ago - apparently I have a hernia too which I need to see my GP about on Monday. Regarding the nerve pain, she seemed optimistic that it would settle so will have to wait and see. Telling myself its just pain! At least I am not ill, it's so hard though once you get tired I find; sometimes the pain is so so consuming it seems difficult to hear, taste etc.... it just dominates. I'm surprised your doctor hasn't offered you more help, I thought that you could get injections to kill the pain for a while. It seems wrong to leave you in such a bad way.

[cuddlybear in reply to _hope]

Hiya...omg u poor thing,a hernia.....and you recovering from your hysterectomy...try not to panic as it may be an infection,the same happened to me pet except I had 5 lumps along the scar line and it settled after a long course of strong antibiotics....I had a hysterectomy 6yrs ago and hav had 39ops(major and minor)over the last 21yrs........I'm on 32 tablets a day....for the pain I'm on 80mg Oxycontin(morphine),tramadol,buscopan,amytriptyline and I have an injection every 4wks....am also on a 4weekly injection of prostap as well as HRT....d list goes on and on....d worst pain for me is the nerve pain and they told me that the sciatic nerve is permanently damaged.....as for the amytriptyline what dose are you on,they usually give you 10mg to start but personally didn't help at all,den it was upped to 30mg and finally up to 50mg a day...it took about 6wks to kick in but its amazing and really works for me....hope your feeling a bit better today,Hugs

[_hope in reply to cuddlybear]

Thank you, the hernia's not too bad, nothing like the nerve pain. GP says that because its incisional they'll wait until 6 months post op to see if it heals. I'm only on 10mg amitripyline, 50mg sounds really high, does it make you very sleepy? The 10mg is knocking me out!!

So sorry to hear your nerve damage is considered permanent, are you able to do much?

Take care, hope you're having a good day... tough when your in pain xxxxxx hugs to you too

[cuddlybear in reply to _hope]

Hiya.....was started on the 10mg and yes it did make me very drowsy and out of it and over the next 3months it was upped to the 50mg and on it now over 18months and dont get affected by it anymore except for the relief it gives me....find it brilliant........unfortunately Im not able to do much and havent been able to drive for over a year now...,am more or less housebound and when I do go out I have to use my crutches and have to have some-one with me at all times.....my 2 sons and my husband keep me going and I have brilliant support from my family.....,I also attend a counsellor once a week and she's absolutely amazing and decided my new hobby was going to be my garden....I love flowers and enjoy planting from seeds,bulbs etc so I go into my greenhouse once a day to potter about and absolutely love it....my own little haven.....Hope your feeling a bit better today xx

[_hope in reply to cuddlybear]

Oh bless you, you are suffering - is there really nothing more they can do to ease the pain? I do feel better today, same pain but so much happier - had a lovely morning with some friends. I think some of my recent struggle has been with coming to terms with the fact that hysterectomy has not taken away the pain. I'm glad you have good support, it's so so important. My hubby and 3 girlies are amazing, and my friends; can't imagine going through it alone..... this site is brilliant too - challenges me sometimes and comforts me too. Hope you have a good day today xxx thank you for making time to chat. You've been a comfort and a challenge!!!! You have your own pain to deal with which is more than mine, but you take time to help Thank you xx

[cuddlybear in reply to _hope]

Hi pet....it was very distressing having the hysterectomy but found it even more distressing accepting that I will more than likely suffer with endo for the rest of my life and will always be in pain one way or another and try so hard to be positive so finding ways to live with it as best I can....I genuinely don't know where I would be without this site,not only for the amazing support but made me realise I wasnt crazy and there were so many other women just like me,it was a huge relief....if you ever want to chat or ask a question your more than welcome to pm me anytime and theres no need to thank me just happy I helped....Xxx