Post op Endo excison and bowel resection.

[Eve7]

Hi everyone,

I just wanted to update you on my situation. I had endo and bowel surgery 10 weeks ago. I was initially more nervous of the bowel prep! However, it was not quite as bad as I expected despite not being pleasant! I had my bowel prep at home which was more psychologically comfy being in my own home and toilet, but was surprised to still be passing little amounts the morning after and had quite a drive to the hospital with numerous toilet breaks! I had assumed it was all done and dusted the day before, however, my body had other ideas. I got there without any "mishaps! "

As for my surgery.... I went under anaesthetic consenting for pretty much anything as my joint teams were unsure exactly of what they would find and treat. I woke up a while after quite sore but with 30cms less of my large bowel but no temporary colostomy! I cannot tell you the relief I felt despite being anaesthetic dazed! It was performed lapariscopically, however I spent 7 days in hospital. I had an excellent post op recovery and have continued to do so despite residual tiredness. I cannot believe how far I have come in this space of time!

Apparently my endo was extremely severe on my left side. Things were stuck together like concrete and took some work to sort out! I am so pleased I opted for surgery, although I appreciate it is still early days. I am back on medical treatment as my endo is so severe the consultant feels it will return quickly without it. So for now I will focus on my recovery and then at the right time, consider starting a family.

Thank You to everyone for the advice given to me pre-operatively ... it was much appreciated!

Hugs to all x

[Suzied2b]

Hi there,

So glad for your happy results and that everything is good. Could you tell me how did they find the endo on the bowel was that via a laparoscopy or a colonoscopy?? It's just I have endometriosis and was treated for some in March but still in pain I was wondering ifor I had it on the bowel and how would they see it?

Xxx suzie

[Eve7 in reply to Suzied2b]

Hi Suzie,

Sorry to hear you are struggling ... it is so frustrating at times with endometriosis. I knew my bowel was involved years before when I had a laparoscopy as it was seen then but not touched as my consent had not been taken. I remained on medical treatment as i still had pain post op however, of late suffered more with bowel symptoms and requested further opinion. I had an MRI scan which confirmed significant bowel involvement (which I already knew) but we were unsure if it had "entered" the bowel so I had a sigmoidoscopy. From this it appeared not to be "in" the bowel itself, however, I was consented to have bowel resection if necessary. Apparently once they looked inside, they saw that the disease was covering a significant length of my bowel on the outside and had started to penetrate through the bowel wall so could have caused a bowel obstruction at some point in he future if left untreated. They felt it covered too much to leave untreated.

I had not realised how much my bowel had been affected...my bowel symptoms I just sort of put up with ... constipation, change in habits etc. I actually expected to wake up and be told it was all in my head and nothing was found! I felt strangely "relieved" that my surgery request was "justified" if you like.

If something doesn't feel right, ask for further opinion. I was under a gynaecologist local to me with an interest/specialism in endometriosis but for my surgery I requested a referral to a specialist endometriosis centre where there is a multi disciplinary team dedicated to endometriosis....hence the reason I had a gynaecologist and a colorectal surgeon in theatre together for my care. I am very pleased I asked for this referral. There are a few up and down the country. You may need to travel a little but it's worth it.

Obviously only you know your symptoms and how bad they are ... but try not to be fobbed off. If it doesn't feel right.... keep telling them!

I am back on medical treatment post op as sadly I have a fast returning endo and the consultants feel it will be best for now as the pain returned almost immediately for me previously.

I hope this helps? Sorry it's long winded, but feel free to ask anything else.

Good Luck xxx

[Suzied2b]

Wowzers. That's a lot to be dealing with. Just had a massive reply and bloody refreshe'd the page by accident and it deleted my reply. Can't remember what I put now!

Anyway I'll try. I think I might mention that I want a thorough look into my bowels as I feel I'm getting pains relaged to that area that arnt my usual ibs pains. It's just a night mare and makes me fed up going to the Dr's every week and getting nowhere in a sense of me still having pains.

I've tried so hard to stay positive especially since having the coil im determined to get to the 6th month mark and hope the pains will ease. But at the min it's so hard to see the light at the end of the tunnel. I've even looked into to going back to college/night school to try have a focus. But then I feel my pains and panic and think I'll not be able to do it. I've lost 2 jobs already because of the endo. And my Dr has deemed me unfit for work at the minute.

I hope you get the pain relief fromantic your new Meds. I'm currently on amitriptyline but I want to try and go back on tramadol as that makes me so spaced out and zombiefied I don't remember feeling pains when I was given them after my miscarriage and ectopic.

I'm just so fed up and think numerous times about throwing myself in front of a train just to get he pain to stop. But then I'd be leaving behind my 2 sons and my amazing fiancé it's seriously like I can't win. Xxx

[Eve7]

Hi Suzie,

I know what constant pain is like ... I suffered so much before I had treatment/surgery years ago. I felt crazy between acute pain, then chronic back ache type pain that nothing touched. I appreciate you want meds that help take that pain away... have you ever had acupuncture or used a tens machine?? The tens machine didn't help me, although the acupuncture eased the pain (bit didn't clear it completely) and I've heard other ladies say it has helped. Anything is worth a try I found! Sadly for me, just being on the medication has been my only pain relief....although I've been on GnRH analogues for around 10 years now and it worries me as they are only recommended for 6 months use!

Although not a life threatening condition, endometriosis affects quality of life greatly due to its symptoms and it's difficult to control them in some cases. Where are you based? Perhaps forget the GP and go straight back to your gynaecologist or ask your GP for the specialist centre referral.

It broke my heart to read you feel like throwing yourself under a train due to pain, you really do need further opinion if it is still so bad. Please don't give up ... keep badgering the right people. At the specialist centres they have endo specialist nurses and pain teams attached who may have more info than I can give you.

Do it for you. Do it for your lovely children and fiance....one should never feel like they are bothering the GP. ..if you have pain then you HAVE pain. Please please keep asking for help.

And please keep messaging if there is anything else I can do.

Sending warm hugs your way xxxx

[jillybean85]

Hi there, this sounds similar to what I have to get done. I have endo on the surface of my bowel and on my left pelvis. They were able to remove some of it initially however they have to do a second operation with a bowel surgeon so they do not damage the bowel. Did you have pain when passing your bowels? My pain feels like I have someone yanking a rope on my coxics. Not very pleasant at all. After the first op I have the jaggyness feeling in my pelvis and my belly button is extremely tender aswell. I only had my surgery last Sunday so it has just been 9 days since my operation.

I am reassured hearing how well you have recovered after your bowel surgery though.

jillybean85

[Eve7 in reply to jillybean85]

Hi Jillybean85,

So sorry to hear you have to go through a second op....never a pleasant experience! However, I must say I felt in very safe hands knowing it was joint surgery as I knew if there were any concerns both experts were there to sort them out.

In terms of bowel symptoms, it was difficult to know as I had been medically managed for sooooooooo long, but I sometimes found it difficult to go to the toilet despite no change to a healthy diet. However, prior to the medication I experienced alot of pain when opening my bowels .. mainly very sharp shooting pains which had on occasion caused me to pass out.

I am so lucky that my surgery and recovery have both been very smooth. I had a very positive attitude from the beginning (I was convinced it would be a quick op and that the fuss would have been over nothing!) Hehehe but even my surgeon commented on how well I looked considering how serious things were. I just took 1 day at a time and did whatever I felt able to do and rested when I needed too.

Do you know when you will have the joint surgery yet? Do you have family or friends around to help out when you first come home?

Sending get well wishes for your previous op, and warm hugs for the next.

Feel free to message anytime if I can be of help. 😊 x