** Intensive Care Bowel/kidney/Endo

[Keith83]

I am a husband to my wife who has the terrible condition of endometriosis.

Long story short my wife has had this since puberty. This has caused various issues along the way.

Now gets the tough bit......... its now got severe. The doc needs to complete an operation that will take approximately 10hours to sort. The issues are.

- The bowel needs to be cut and sorted as everything is stuck together and causing pain and bowel problems.

- 10 Hour operation

- Intensive care after her operation.

- Endo on kidney so that needs looking at.

- Endo on Bladder.

- Full Hystorectomy.

The consultant has basically said he has never seen anything like it.

This is a really tough time at the moment. Has anyone else experienced this?

[mrsswinnydm]

I haven’t and this may not be helpful but it’s must be really tough for you both, so thoughts with you

[Deb1511]

A friend of mine had very similar though was only 6 hour op and no hysterectomy was done though she feel great post op. Didn’t want to read and run as you both going threw this difficult times and great you on here asking for help and advice to support your wife. Hope all goes well and she is ok

[Magsiemoomoo]

Hi Keith

I'm so sorry to hear how your wife is suffering, endometriosis is such a horrible misunderstood and poorly researched disease.

It sounds like she has a lot of support from you which will be needed even more lost operation. While I had endometriosis and suffered for 2 years extreme pain before surgery my surgery was in no way as extensive as your wife's but I am happy ho share my story if it helps at all.

So I had endometriosis and like your wife I believe it stemmed from puberty ...I had ovarian cysts at age 18 and was put on the pill to stop me ovulating. While this seemed to work when I came off the pill about 6 years ago I started to have issues every month with severe pain and bowel problems. Roll on to 2017 and I was in constant daily pain ...

I was having monthly injections to put me into pseudo menopause ..I was scanned and had ovarian cysts again and referred to a gynaecologist. My gynae felt that surgery was the best option and suggested a hysterectomy but I didn't want to do such am extreme measure if it wasn't necessary. My first surgery was end Jan 2018 to remove an ovary ,2 cysts and while operating he cut away sections of endometriosis... Following surgery I felt better after recovery but with 6 months was back at my gynaecologist in extreme pain ..so bad that every step I took was agony.. getting down the stairs on some days was near impossible .. I was on 30/500 co-codamol but I couldn't take it until I came home from work as it made me sleepy and I worked in a role that required mental clarty. Long story short I had my second surgery in April 2019 to have the endometriosis cut out and a total hysterectomy ..they found endometriosis in my pouch of douglas and other areas but luckily for me my organs were not stuck together unlike your poor wife.

I didn't have a supportive partner throughout this and as a result we are no longer together. While my situation was in no way the same as your wife's I just wanted to let you that my second surgery and total hysterectomy was the turning point of my study of daily pain with endo and following a six month recovery ( though I went back to work after 6 weeks which was too soon).. I have never looked back...

There is light at the end of the tunnel and you being there as a positive and supportive partner for your wife will be what gets Herr through any difficult or slow recovery times ...

I wish you both love and light and am sending positive and healing thoughts to your wife ❤️❤️

[Bespp]

Hi there, sorry to hear about the severity of your wife's endo and what you both are going through. What I have heard from this forum that once endo has had such a great spread it the theoratic endo is another one that is discovered through the surgery. Has one one been involved on that side? Wishing good luck to your wife and loads of strenght to you for support.

[Hayayaya]

I haven’t experienced this but it’s so heart warming to see you support your wife 🥺 I hope it all goes well for her!

[Fraser1]

If you have Instagram give battlewithendo_ox a follow!!

[Lisalovesgin]

You have my sympathy this is not nice for your wife at all. I’m currently an in-patient recovering from a similar situation. My endometriosis was stage 4, adhered to my bladder, bowel, rectum, ureta and incredibly and debilitatingly painful, I also had adenomyosis and very large bilateral ovarian cysts (I didn’t know before removal but one was very badly infected). Over the last 3 or more years I’ve had various pain medications the use of Zolodex to control the size of the cysts (I hated this medication it made me feel dreadful!) 2 laparoscopic failed attempts at a hysterectomy, uterine ablation and to top it off significant scarring from 3 c-sections. It’s fair to say it’s all a bit of a mess inside! I had my surgery a week ago and I’m not going to lie, it’s been really tough and very painful. I was cut vertically down my tummy and was in theatre for many hours, recovery for over 24 hours (trying to avoid High Dependency). I had 3 surgeons with me and was booked in to be the only multi disciplinary case that day. I expected to be in theatre for a significant portion of the day. My surgeons have done the most amazing job, the nurses and all the staff here in the hospital have been astounding, I was told there is was 90% chance of an ileostomy (potentially to be reversed at a later date) which I was prepared for and a stay in hospital of around 2 weeks. Post op I was one of the lucky ones, they have managed to remove my reproductive organs, cysts, endometriosis etc too mine and their surprise without the need to have a stoma - frankly nothing short of amazing! My recovery is slow and very painful, but getting better and stronger each day. I’m hopeful to go home today exactly a week after surgery, I don’t know what the future holds but I know that the pain I was in constantly everyday is already outweighed but the success I feel having had successfully had the surgery. I should add this has all been done at my local NHS hospital and I have had the unconditional support of my family throughout all this. I wouldn’t change the decision I made to have the surgery even when it looked like I might go into High Dependency and I know I’m a long way from being pain free and back to normal, but for me it already feels like it was the best thing for me to have done. Only you and your wife can make the decision as to what’s best for you both, and your circumstances maybe different to mine, but whilst the risks are incredibly high for me they were worth taking and I’m not a gambler. I hope your wife is speaking to the right people and I wish you both the very best in making the decision that is right for you. Your wife is lucky to have the support and understanding of her husband. Good luck.

[Blondz]

Hiya Keith, my heart goes out to you both. My partner...stage 4, has had lots done over these past 14mths, including the bowel separtion....26 feet of bowel apparently, cysts removed etc etc. She is usually in pain, sometimes severe pain, on opiates for pain relief. I could go on. It is massively difficult, massively , trying to support someone who loves you but can’t and don’t always show it. My experience is being shouted at and for want of a better word abused, not her fault, I’ve been known to be a crotchety bugger whilst in pain or tired and emotional, it’s difficult to make plans coz today is a bad pain day and she can’t get to the toilet without your help but she doesn’t want your help. It affects everything, we can fight like cat and dog but we love one another and are finding our way through. It’s getting through a day at a time and sometimes getting from one hour to another but there does seem to be a bit of improvement after the last operation and we are ever hopeful and truthfully I think that the experience is making us a stronger couple. I hope that this is helpful Keith and I’m very happy to chat further with you and share. All the very best to you both, sending hugs and strength xxx