Anyone been diagnosed or had treatment for thickening of utero-sacral ligaments??

Hi

I had my 1st Benenden consultation and after reading my notes from my NHS dr he asked some questions and then said had anyone checked for ligament problems. I said no so he did an intetnal, got md to make two fists and put the under my bottom. He then felt about until he pressed on something that was very uncomfortable. He said I had thickening of my utero-sacral ligaments and it was probably endo. After me saying about how heavy my periods are and that I turned down the mirena coil we settled on a lap to diagnosis & treat my endo and I asked for an ablation to end my periods as I'm in my 40's and completed my family. He said this was a good option and as I got on well with Decapeptyl I would have 2/3 months of that before the op and then prob some after.

So am set to have my op in Aug now due to the prep and iM away in July.

I am happy with this but now just questioning the op & recovery. Was told depends on who operates as to if its cut out or burnt out and that because he would be 'stripping my pelvis' I would be in a lot of pain so I would prob need to be in overnight. Has anyone had endo these ligaments and if so what was done and how was your recovery and long term recovery as thinking ligaments must do an important job of holding things together. Also allowing a healthy and pain free sex life. I have yet to sign op sheet he said it would be completed and gone through on the day.

Does anyone have any experience of endometriosis???

Thank you

Malred8

12 Replies

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  • Hi Malred

    I had endo in my right uterosacral ligament and i went through this kind of internal check. They found endo around my ligament, but also part of it was thickened due to endo.

    They managed to remove all endo from the root, but this meant that part of the ligament had to be removed. Dont worry, the part they cut, grows back, but as scar tissue that unfortunately is not so flexible as the rest of the ligament.

    This means that some discomfort will be more or less present, and personally speaking I had 1-2 really hard months after the lap. The neurological pain was severe (nerves irritated/cut as this area is full of nerves), but it gradually became better. It is true that this is the healthy way to go and not to let endo spread anywhere else (if it was meant to spread of course, something that no one knows ever) and it can relieve sex life a lot. You are going to have good days and bad days and you will find that any pain after operation doesnt g oalong with your period. Sometimes i'm completely pain free during ovulation and before period..when I had endo these days where the worst!

    My endo gynae said that 1 in 3 women have a bit of 'adventurous' recovery as I had. I do hope you are in the rest 2 women! If you have the option to go for a cut out/excision is much better than laser/burnt out, as laser takes off only the surface and not the root. I'm endo free at the moment (yeahhh) with some fluctuations in the nerve pain where they operated. But it will be better, I really dont mind to be left with some sensitivity only, compared to the pain I had before!

    I hope I helped a bit, anything else you want to ask, please go ahead. xx

  • Hi Jojo

    Thank you so much for your reply good to know someone else has had the same as I possibly have and you seem to have come through it relatively well. Had images of standing up and the feeling of everything dropping out of my stomach and not being able to support it all. Was your stomach swollen for long after and how long did u have to have off work?

    I'm prepared with peppermint tea and sweets and I had meals prepared in the freezer thinking it was being done sooner but now I know I def seem to have done endo and they will carry out a fair amount of work I am happy to wait and have Decapeptyl in the next month of so.

    One more question I hear some people have to have bowl prep to clear them out pre op, did you ?? How bad was it passing urine and going to the toilet after.

    Thank you again and I hope you stay as 'almost' pain free as you can for as long as you can.

    Best wishes

    Malred8

  • Hi there

    The swelling was not too bad, but as my gynae said, it depends on how each surgeon works, mine worked with the minimal amount of gas and I was almost flat after 2 weeks and no gas trapped at all, where in my first lap (with another gynae) I was suffering a lot for a few days due to gas trapped in my ribs. Its good you are prepared just in case!

    Once again, the bowel preparation is up to what the gynae prefers, for my 2nd lap (the one they cleared and cut part of ligament), my gynae told me to eat specific stuff the last 3 days (to avoid bloating etc) and on the day of the lap while I was in hospital, I had an enema. In case you dont know is the solution they put in the backside with a bit pressure. Its a weird feeling it doesnt hurt at all and I remember the nurse telling me to wait 2 minutes and then go to the toilet...needless to say as soon as she left..it took one second to visit the toilet! Sorry for too much info, but it was a bit funny! :p

    I know from other women on this forum, that some of them have the preparation the day before, I'd rather have the enema again if I had to do it all over again, so I can eat the day before! So, I guess it all depends on your doctor and you can find all about it when you see him/her again

    i had a catheter for almost 24 hours that was inserted while they operated and it was a bit painful for 24 hours after they took it out, but the bladder worked just fine and no pain at all on the 3rd day or so :) xx

  • Thank you again Jojo

    Prob won't see the surgeon until the day. All I have to do is wait a week or so now for them to be booking ops for August, phone get me op date and then be told what day I need to go for my pre op about a week before. So pleased I started paying g through work for Benenden, the distance is a pain as its abkut1hr and a half away but they communicate so much more. I had a lot of faith in my NHS gynaecologist it's just the waiting, and trying to get info or answer from their secretary's of the admission team is not easy. Plus as there is no A & E attached to Benenden the chances of the op bring cancelled last min as hopefully smaller.

    Malred8

  • Yes I agree, all doctors that work private they also work in NHS though, so the quality of work and skills is the more or less the same. I'm in private healthcare too, BUPA, along with hubby.

    Wishing you good luck and keep me informed how everything went :) xxx

  • I've just had severe endo removed from both my ligaments, including a 2cm nodule of it. Mine were lasered and cut out. The recovery hasn't been too bad, a week on and I'm pretty mobile, the worst of the pain was over in a few days. I stayed in overnight but that was because they had to take my ovary out. Good luck for you lap and I really hope it improves your pain x

  • did you have any back pain as your symptoms before treatment on your ligaments? xx

  • Thank you for your post Jen1982. Good to know you felt better after a week. Hope you continue to improve. I know I will be terrified just before but am also counting my blessings that this horrible condition has hit me now I'm that bit older, like the dr said many people have 25yrs plus to suffer and go through many ops. Am I'm blessed with my family, something that I did think might never happen when I had a miscarriage with my 1st pregnancy. So don't give up hope everyone and its your body keep gong until u get a consultant who knows about endometriosis and listens to you!

    I've been lucky with that too both were great just the registrar who I've seen wanted to try n fob me off.

  • I have been diagnosed recently with Endo on both Uterosacral ligaments. I am waiting to hear what my options may be ....x

  • Hi Malred8 im so pleased that the ball has started to roll for you and that you will be on the mend very soon ........ im post op 6 weeks now from my total hysterectomy my experience at benenden hospital was fantastic i was in for 24 hrs the doctors and the nurses where so very nice they looked after me very well .... i hope you have a speedy recovery when you have your op and that all goes well for you :)

    a little tip for you get a bottle of lactulose from the chemist ready for when you come home from the hospital as well as having your peppermint tea xxxxx

    have a fantastic holiday xxxxx

  • Thank you Shaz

    Can I just ask a few questions about your op at Benenden?

    Did you just have to go in the day of the operation & if did you know your operation time or were you just to be there at a certain time (I. E early) as we will be travelling 1 and half hrs but would be good to sleep in my own bed and travel on the day to give me something to think about.

    Do you get S private room or is it a ward type set up? Also when you go in does your partner have to leave you at reception or can they stay with you until you go down? Are they called to come & sit with you when you come back or are you made to stick to visiting times?

    Sorry prob be told this at the pre op but I like to know these things and prepare myself. Also did they write you a certificate to be off work ?

    Thanks will def get the lactulose.

    Will hopefully relax & enjoy our holiday it's to celebrate our 25th anniversary !

    Malred8

  • Hi Malred

    i had the morning slot which ment i had to be there for 7 am along with all the other people due to have their ops as well ..... you all sit in a big lounge and the nurse will call you to do your obs then you meet the surgeon to have a chat and then you get gowned up (with your sexy stockings) by this time you should no what time you are going down to theatre .. your partner can stay with you right up until you go down,i went down at 10 am they brought me back at 1.30pm and i didn't wake until 4.30pm :). there is a lovely cafe on the same floor as the wards he can wait in their or go back into the lounge i think ..once you come from theatre onto the ward your hubby should be sitting there next to you waiting for you to come round a bit more ( my man was it was lovely to wake up to see him there ).

    before you leave the nurse will give you some paper work and a sick certificate if not just ask them and they will go and do one for you .

    take some reading material with you for both of you that was a mistake for us we didn't take anything .

    loose clothing as well for when you leave to go home you might have a huge tummy i looked 6 months pregnant when i left :)

    be sure to rest as much as you can

    i hope this has helped you a little ......... i would love for you to keep me posted on the lead up to your operation and then afterwards ...

    chat soon xxx

    shaz1966xxx

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