Feeling disappointed

Good evening lovely ladies hope you are all feeling okay today.

Had a laparoscopy December 2015 endo on uterus and bowel. Burnt off the endo on my uterus, but could not get to my bowel to remove. Referred to endo centre had my appointment on wed but the hospital who did my lap had sent no notes, so no pictures of my endo or bowel. On temp menopause by Decapeptyl injection and HRT. Having an internal scan in june. Does anyone know if endo on my bowel would show up on this type of scan. I am still in pain in my pelvis, back, uterus, ovaries, tops of my thighs. Groin, pain up my bottom. Painful bowel movements. Don't know what to do next. Just want to feel normal.Wouldo welcome any advice.

Hopeyou have a pain free weekend love to you all xx 

19 Replies

oldestnewest
  • Hi it will depend on how bad the eno is and how experienced the sonographer is.

    Glad you're now being see at a BSGE centre. Keep us updated and good luck.

  • Good Afternoon Jean hope you are feeling ok today and not in too much pain.

    Many thanks for taking the time to reply to me much appreciated.

    I am really suffering with my bowel at the moment with a lot of pain and discomfort.

    Was quite annoyed as the hospital didn't have any of my notes from the gynae hospital who did my lap in December last year. Doctor said some of my symptoms could be IBS but I have had IBS and I know it is not that because these pain are certainly different. I know my own body and I know something is not right. The doctor said as I am on a temporary menopause the endo can't grow more on my bowel, I am not sure about this though.

    I feel for everyone of you ladies on this forum because this is a truly awful condition.

    Take care my lovely and I hope you enjoy a pain free bank holiday weekend.

    Lots of love Janet x

  • Hi Janet, if your endo is severe it can produce its own oestrogen so therefore continue to 'grow'. I know you're on the injections now but before that were your bowel symptoms cyclical?

     I was diagnosed with Ibs 10 years ago but never actually believed it as most of the month I was fine , would only suffer around my period. Take care sweetie.

  • If the endo is deep and has distorted the bowel it could show up, but it's never conclusive, hopefully your in the best hands now, why havnt they reffered you for a MRI,? 

    I would think he will do another laparoscopy and hopefully excise all endo, and a bowel surgeon will be there too, good luck xxx

  • Good afternoon sweetie

    Hope you are ok and not in too much pain today.

    Thank you for taking the time to reply to me much appreciated.

    Because the specialist centre did not have my notes they could not look at my pictures of my endo and bowel. I did not see my endo consultant this time saw one of his team and she said some of my symptoms could be IBS, I have had IBS in the past and this pain is nothing like that. I know my own body and I know something is not quite right.

    The hospital are doing an internal scan and will see my consultant the same day. Rang on Friday as had not received a letter and they said I would in a couple of days. Offered me 13th July but that would mean I wouldn't be on any treatment at all. No decapeptyl injection or HRT. Receptionist told me to call the consultants secretary to see if I could be seen sooner. I am going on holiday 11th June for a week and don't want to be in severe pain then.

    Maybe the consultant will want to do an MRI or another laparoscopy.

    I am suffering with pain, taking pain killers and laxatives frequently.

    This condition is awful isn't it, just would like to feel normal.

    Hope you have a pain free bank holiday weekend my lovely.

    Take care lots of love Janet x

  • Hi 

       I am in a similar situation, but during my appointment the endo specialist had the photos from my lap. He has ordered an mri to check out the areas involved. My bowel is involved and like you I know it isn't much fun!! I had an internal ultrasound prior to surgery and it didn't show up the endo. I think that there are guidelines about endo and bowels. I know that my gynae endo specialist is worried about how widespread the endo is etc. If more surgery was an option a bowel surgeon would be involved. Ask about an MRI? and really they should have access to the lap photos. I found talking to an endo nurse specialist a life saver. If you went to a specialist centre you should be able to access one. 

    I don't think that more surgery is an option for me and a medical menopause may be the only other. 

    Take care and hope you have a pain free weekend too xx

  • Good afternoon sweetie

    Hope you are ok and not in too much pain today.

    Thank you for taking the time to reply to me much appreciated.

    Because the specialist centre did not have my notes they could not look at my pictures of my endo and bowel. I did not see my endo consultant this time saw one of his team and she said some of my symptoms could be IBS, I have had IBS in the past and this pain is nothing like that. I know my own body and I know something is not quite right.

    The hospital are doing an internal scan and will see my consultant the same day. Rang on Friday as had not received a letter and they said I would in a couple of days. Offered me 13th July but that would mean I wouldn't be on any treatment at all. No decapeptyl injection or HRT. Receptionist told me to call the consultants secretary to see if I could be seen sooner.

    I am going on holiday 11th June for a week and don't want to be in severe pain then.

    Maybe the consultant will want to do an MRI or another laparoscopy.

    I am suffering with pain, taking pain killers and laxatives frequently.

    This condition is awful isn't it, just would like to feel normal.

    Hope you have a pain free bank holiday weekend my lovely.

    Take care lots of love Janet x

  • Hi Jean yes my problems were always worse before and during my period.

    I had anMRI on my back for a disc problem and they discovered something wrong with my uterus. After an ultrasound scan on my tummy, they said I had a very bulky uterus. Which was most likely due to my endo. I am now 44 and have had problems with my periods for years with pain. Started seeing the doctors at age 30 and was told it's your weight, your age or just part of being a women. Finally diagnosed after a lap December last year.

    Really appreciate your advice Jean means a lot to know I am not alone with this.

    Take care lovely hope you can have a pain free night.

    Sleep well sweetie lots of love Janet xx

  • Hi Hun a bulky uterus would suggest adenomyosis.  I really hope you get sorted sweetie. This disease can be so awful but we'll get through it. Sleep well Hun.

  • Good Morning Jean hope you are having a pain free weekend :)

    I was thinking I might have adenomyosis too, is this a secondary thing to the endometriosis I have.

    I guess this will show up on the internal scan.

    How are you been treated at the moment Jean. Have you had a hysterectomy.

    I am so thankful for all you lovely ladies on here for your support, don't where I would be without you all.

    Hope you have a nice day Jean and hope you are not in any pain.

    Take care lovely lots of love Janet xx

  • Hi Janet, adenomyosis is where cells similar to endometriosis grow within the muscle wall of uterus.

     I had hysterectomy, BSO and excision on 3rd March. I was doing well initially but seem to be going down hill. 

    I've been having problems with bladder since August last year and we thought it was due to 11cm endometrioma putting pressure on bladder. But this hasn't improved and the last two weeks I've been in a lot of pain with it. 

    Also getting a lot of lower back pain where it radiates from spine to hips and down both legs. I'm pretty sure it's osteoarthritis as I already have it in both knees. 

    I've managed to bring my follow up appointment forward to Thursday so hopefully get some help. 

    It doesn't help that I seem to have come down with a virus so feel crap anyway.

    I'm hoping consultant will agree to start hrt as he wanted to leave it for a few months while things settle, but I can't handle the hot flushes, as they've become so bad now, I'm not sleeping and can't stop crying. 

     I have to believe things will get better and with the support of everyone on here I know I'll get through. 

    Hope you have a good weekend.

  • Hi Jean

    Thank you so much for the information really appreciate your help.

    Did they take everything away at your hysterectomy or did they leave your ovaries.

    I think I might end up having the hysterectomy eventually.

    How long does it take to recover after this operation, just wondered how long I might be off work for.

    Really hope you feel well soon lovely

    Take care lots of love Janet xx

  • Hi Janet, yeah they took everything as both ovaries and tubes were badly damaged, cervix went too. 

    They say 6-8 weeks but everyone's different . I'm coming up to nine weeks now and I've got another 3 weeks until sick note runs out.

     I was initially signed off for six weeks but GP extended it as he didn't want me back at work till I'd seen consultant again due to pain with bladder. I was supposed to be seeing him on the 19th may but called them and they've bought it forward to Thursday.

    My op itself went ok although very complex as bowel was badly stuck to uterus and so were uteras. The adhesions were so thick he couldn't actually see my uterus.

    I had an internal bleed after surgery and needed a blood transfusion. Which was so scary as it was looking like I'd need to go back to theatre , but fortunately that didn't happen.  

     Hope you're ok Hun I'm always here if you need me.

  • Ahh thanks Jean your help and support means so much to me.

    Hopeing I will get more answers when I get to see my consultant.

    Hope you improve really soon honey and have pain free days.

    Lots of love always

    Janet xx

  • Hi Janet, 

    It is so frustrating when they don't have your notes! I would contact the secretary for the consultant who did your laporoscopy and ask that they send your notes, any results, photos of the op- everything they have from their operation to the new clinic you are at. It can be a long haul to get the right doctor/s and the right and best treatment for you, but there are lots of people out there and you will find them. The one thing I've learnt is how important it is to try and be firm but not difficult with the medical staff- you are a person not a patient, you are suffering and they need to help- so in order to keep stress down and not waste more of your time and precious energy make sure they have the correct notes for the July appointment and don't be fobbed off! 

    Good luck and hope it gets easier soon 

    Xx

  • Good Morning Nora hope you are having a pain free day today.

    Thank you for taking the time to reply to me, I appreciate it very much.

    Thank you so much for your support and advice.

    I am so thankful for you lovely ladies on this site, I don't know where I would be without you.

    I am going to have a word with my consultants secretary on Tuesday to see if she can make sure that my notes are there for when I see him.

    I do think I am in the right hands now and I know they will look after me and give me the treatment I need.

    Have a lovely bank holiday weekend sweetheart

    Take care lots of love Janet xx

  • Hi ladies, 

    As far as anything being picked up on a ultrasound or MRI these scans are only as good as the person looking at them and sadly like endo taking so long to being diagnosed 8+ years there are very few sonographers whom know what they are looking for.....speaking from experience..

    I would advise you to watch endo what it's only just been released and you do have to pay to view it but has lots of information.. All I can say is you know your own body and don't let anybody try to tell you different as this is a common problem..

    Also if your going for surgery make sure you ask your surgeon all questions relavant to your surgery (for example if you know that your bowels involved ask if there will be a bowel specialist they can call in if needed) as if not you will end up with repeated and unwanted surgerys.

    Good luck ladies Yazza. X

  • Good Morning Yazza hope you are having a pain free day today.

    Thank you for taking the time to reply to me, I appreciate it very much.

    Thank you so much for your support and advice.

    I am so thankful for you lovely ladies on this site, I don't know where I would be without you.

    I am going to have a word with my consultants secretary on Tuesday to see if she can make sure that my notes are there for when I see him.

    I do think I am in the right hands now and I know they will look after me and give me the treatment I need.

    Have a lovely bank holiday weekend sweetheart

    Take care lots of love Janet xx

  • It might be adviserble to contact them yourself and ask for all the documents relating to your surgery as they do tend not to give you all the details...

    You will need to put it in writing or email in order to get them I would advise email as it can be tracked.

    Good luck and healing hugs yazza. X

    What area are you in? And have you watched endo what? 

You may also like...