Awaiting hysterectomy because of endometriosis

[Chel69]

Having a total abdominal hysterectomy next month. I'm terrified. Read so many horrid stories.

[54kgx2]

Just wanted to tell you not to worry too much. It's always people with horror stories who post most. I had my hysterectomy in May - I was in theatre for ages as it turned out I had undiagnosed stage 4 endo - I was a challenging case and had many post op complications - but now 4 months on I am feeling much better - it's a big operation so take lots of time to let yourself heal well.

[Marcia71]

Hi. I had a total abdominal hysterectomy and BSOin Feb 2015 as I had adenomyosis. The op itself went well and I went home after 2 nights in hospital.

Unfortunately they didn't take my endo out at the same time so I've been left in pain. Make sure yours will be taken at the same time. Do you have adenomyosis diagnosed or suspected? Otherwise it may not help. Sorry to be down but you need to be realistic. Hope you're under a BSGE centre. As General gynae's just don't understand endo enough and do think hyster will help and also don't take out endo as they believe it dies off. It doesn't

Head to the hysterectomy associations website for loads of help advice and support from other ladies having the same op. I found it a lifesaver.

[KA410]

I had TAH and BSO last Thursday for severe endometriosis. They also had to get the colorectal surgeon in to clear endo from my bowel and separate adhesions and remove my appendix. It's early days but I have to say it has not been as bad as I had imagined it would be. I have been sore but the painkillers work well and I've been very tired and needing a lot of help from my family with looking after my children.

Please try not to worry too much. Think of the positives. Once it is all over and you have recovered from your surgery hopefully it will have all been worth it and you will have a much better quality of life.

Kirsty xx

[Hidden]

Are you having this done at a BSGE centre? If not, or if you're not sure, please don't go ahead with anything until you know. General gynae aren't the best people to do this.

Also remember that you don't have to do it if you aren't ready, even though you have a surgery date.

[Knickknack]

I had a TAH and BSO in May it was done by a general gyn and I'm now needing to see a specialist bc I still have pain. I would make sure you are going to be operated on by an endo specialist bc if any is left behind you will not be better. There is no cure for endo but I will say not getting a period anymore is a plus. Good luck with your surgery Hun!

[Hope264]

I am sorry to hear you are feeling scared. I agree with the poster that comments how or if it happens it is still up to you even if you have a surgery date set.

Pelvic prolapse is also something to consider for removal of uterus and as to what type of hysterectomy and how the ligaments are treated. My physio describes the uterus as the inner part of a bicycle wheel for the stregnth in this area of the body. Also recovery times an open or laproscopic surgery can bring. I havn't had a hysterectomy so cannot comment but have had major surgery on this area of my body and recovery can take more time than you expect even with no complications. Planning how to care for yourself afterwards is important.

Best of luck with getting your information and making decisions that are right for you and speedy recoveries. 🌷

[Suze1974]

Hi! I had a total hysterectomy at the end of June and although it was a very tricky procedure as they were dealing with endo, previous scarring, a mass attached to my uterus and also a fibroid I haven't had any complications and was back at work within a matter of weeks.

The only draw back for me is my sex drive see me to have decreased but I don't have any pain anymore. I've also recently taken up Choi Kwang Do to help me get fit and to increase my core strength.

I was put on HRT the day after my op and that seems to be going well, although I can sense that I am a little more emotional than I have been in the past.

Good luck in your operation and I hope this gives you a little bit of comfort. I'm 42.

Cheers

Suze

[Chel69 in reply to Suze1974]

I'm terrified. Did you have open surgery? How was the wind pain? I'm fed up of reading horror stories!

[Shelly92 in reply to Suze1974]

You may try asking your dr for creme natural testosterone and natural estrogen vaginal creme .

The testosterone bumped up my sex drive .

First they need to test hormones to see if you are low on the hormone . I was so it worked for me

[Soon2bmrsw]

Oh my! I'm sure you will be okay, the horror stories you hear are few and far between. Rest as much as possible before your operation and maybe take up a relaxing hobby like knitting or seeing with plenty of supplies! Treat yourself to new pjs or nightwear and arrange where you will be when you recover, make a 'nest' if you will 😋 So that post op you'll have plenty to keep you occupied and you'll feel like you're doing something if you have a hobby too.

[Chel69]

I'm so worried. Have to have 2 surgeons.x as my endo is stuck to my bowels. Did you have open surgery? Did you suffer from gas pain?

[Shelly92 in reply to Chel69]

My dr was smart enough to bring in a bowel surgeon just in case . I ended up getting cut on the bowel and it was good the other specialist was there

[Hope264]

Chel69 have you had a surgery before? Just going under general can be daunting. Maybe you need a surgery 'plan' . I have done this for myself on each of 3 times I have had surgery and it didn't always go to plan but it helped me communicate what I needed from those around me including doctors and when in hospital for things like pain relief.

What I am hearing here is you sound paniky? Is there pressure on you somehow to go ahead with a certain date without full information. Have other options or treatments been exhausted? If this is for endo are you under the specialist centres that sound so good on there in the UK? Can the date be changed if your not sure yet?

If you have made the decision to go ahead or need help with the process of decision making, can you access a physcologist to help you make some strategies to navigate the experience and the changes afterwards to the body. Or if talk it through with a good friend or even your GP?

Do you have all the information you need to make decisions about the type of surgery. Does it have to be an open surgery?? I have travelled myself to have minimal access surgeries, it cost me in money but saved me in terms of being able to return to work. This was a different surgery but I knew what was able to be offered in my area was about 30 years behind what I could access elsewhere and would cost me months more in recovery and so income.

I wouldn't focus on the horror stories but it is so important to let yourself have the time you need for any irreversible body decisions. Good luck & take care. 🌷

[Chel69 in reply to Hope264]

I have been on the waiting list for over a year but now it's closer I'm panicking. I have to have open surgery due to the nature of my problem. I'm reading all of the horror stories and I'm worried. I know that bad surgery don't happen to everyone but I can't help but worry. I'm looking forward to being pain free after recovery too.

Thanks for advice and taking the time to reply. Xx

[Hope264]

Thanks for posting & good luck, the idea of surgery in itself is so daunting and alien sometimes. I hope the advice of myself & others on here has helped. I have never had a hysteretomy so do not fully have the advice but have shared experience.

I did have major pelvic surgery and it took around 2 years to fully recover. Well to where my body was going to recover to with other issues. But I was more pain free from the endo after the surgery and also during the recovery in a way I only understand now that I have taken endometriosis seriously years later. It was because the endometriosis was removed from deep inside my body on the Utero Sacral Ligaments, even though it was found incidentally in surgery for something else and cut out. I wish I had listened more when my surgeon told me I had the deep endometriosis and focussed on that it was a serious and progresive disease of it's own. That was years ago and I look back on those years as relatively pain free, it has come back and causes me no end of trouble even when I am advised it is 'controlled'.

I have been told I have endometriosis on my bowel and so I do really understand why you might need open surgery and why this may be complicated and carry certain scary sounding risks, which may still be relatively low risks?

If you have faith in your surgeons that you have chosen or accepted and have done everything to prepare for your recovery, chances are life is about to get much better. It did for me after my major pelvic surgery years ago. My best help was a physio before & after and having an epidural as part of one of the smaller procedures was much better pain relief than any of the others and helped get me up & about the same night.

please keep us updated with how your going with it all & take care 🌷

[Hidden]

hi i am new to this i had my pre op last may 2016 my gynae doctor said i would wait no more than 3 months in the meantime ive phoned the hospital several times and they have said im on a waiting list just wait i have five children three who are disabled i have all the symptoms of having gynae problems thus it needs to be removed since these past few months ive been back to my doctors and they have put my on tramadol painkillers and morpine patches as the pain is so bad and its hard to take care of my children with their needs and get up most days because of the pain and bleeding i was just hoping if anyone knew how long i should be waiting to have it done i have a appointment the end of this month will i get a date then or do you think its just a appointment to say they have forgot about me and give me another pre op??? any help is really appriciated

[Chel69]

Hidden I waited over a year. When I rang the Secretary she told me a few more months. I rang twice a week for a few weeks then I had my appointmentioned. I found the waiting the hardest part as you work yourself up and can't plan anything. Mine was done in October and I must say was the best thing I have ever done.

Hope you won't have to wait much longer.xxxx