Stage IV Endo - hysterectomy

[Endonaw]

Hi - I have always had painful periods (that made me sick & pass out frequently) and after a particularly bad one where I couldn't get out of bed I was diagnosed with an ovarian cyst that was removed during surgery when I was 25. This was when they diagnosed stage IV Endo. I'm extremely lucky that I only get pain when I have my period but in the last 2 years I have had chronic back pain with my periods that leave me unable to walk for a few hours, sick and pass out with the pain. After a lap in jan last year my Endo specialist surgeon found my bowel and uterus were stuck together which is what he believes is causing the pain. He recommended a full hyster and ovaries removal via the da Vinci robot ( he is a leading surgeon in keyhole and robotic hyster).

I have cancelled the surgery twice already and it is now booked again for 25 April. I have lots of concerns (surgery, colostomy, pain, hrt) but my main concern is that I know the surgery won't get rid of the Endo so will it flair up and cause me pain more frequently?, and without my uterus to 'fixate' on will the Endo continue and start to stick my other organs together ( my surgeon says it is pretty 'bad in there' so I know he needs to separate a lot during the surgery anyway)? Has anyone had a similar experience?

Sorry for the long note and I feel guilty writing my worries on here when so many people have a much worse time than me, but any advice is welcome x

Thanks

N

[Endonaw]

Hi - thanks for your reply - yes he is (simon butler Manuel) and I am 43 ( no kids due to Endo but we are ok with that .... Now)

Thanks

N

[Brownlow]

Hi Endonaw,

I can really understand why you are nervous about this operation. It's a big step and you still have a lot of questions which I feel you need answered before you commit to this decision.

What did your specialist say that made you conclude "I know the surgery won't get rid of the Endo so will it flair up and cause me pain more frequently?" The whole point of going for this surgery is to get rid of the endo and ensure as far as possible that it will not flare up again. It is true that a total hysterectomy including removal of ovaries is no guarantee that the endo will never come back. It works in some cases but not in others. It depends on the successful removal of all endo. Even though the ovaries are removed, oestrogen is still produced by our fat tissue and adrenal glands in smaller amounts plus there are plenty of xenoestrogens that we ingest on a daily basis via plastics, toiletries etc. Any HRT that you take will have a small amount of oestrogen too. These sources of oestrogen will cause any remaining endo to flare. Whether the uterus is there or not makes no difference. It's the removal of all endo that's important.

I suggest you go back to this specialist and really pin him down on percentage rate of recurrence of endo post total hysterectomy. Ask for his results and what assurances he can give you. You are the one who will have to sign off that you understand and accept all the risks of the operation...not him. Therefore you need to be very clear about everything.

I don't know enough about your case but I think you need to ask if you can just have all the endo removed and leave in the uterus and ovaries and see what happens. I'm not in favour of the pill or the mirena but perhaps you could try these after the op to keep the endo from returning. Also, have you discussed leaving one ovary in? Our ovaries are important for things other than producing eggs and provide heart health benefits even after the menopause. Doctors tend to only focus on their own specialism and often disregard consequences elsewhere and fail to consider the whole person.

The other thing you could do is get a second opinion. It can sometimes be difficult to get a second opinion referral from your GP but your case is complex, it's a big decision and you could also argue that you are uncomfortable being operated on by a robot regardless of whether that's true or not. Some people are ok with robotic surgery and some are not. The important thing is that nobody should be forced to. Use that as a lever to get a second opinion. It might help to talk to someone else. I'm guessing you are near London where there are plenty of endo centres. UCL for example or Guys. Check at bsge site bsge.org.uk/ec-BSGE-accredi... Bear in mind that the same course of action might be recommended.

Regarding the robot, ask your specialist how many total hysterectomies he has conducted using the robot. Also ask if he will be your actual surgeon and not another member of the team. I have 'heard' estimations that it takes 200 operations using the robot to become proficient. I'm all in favour of innovation but when it comes to my health and wellbeing I would question everything and get the statistics first. That's just me.

Sorry...I've rambled too much and probably confused you even more.

Let us know what happens. x

[Endonaw in reply to Brownlow]

Hi - thank you for your reply and you have really helped me with some questions I hadn't considered asking. I have an appointment with my surgeon in the next couple of weeks and will make sure I get all my questions answered so that I feel I am making the decision, fully informed.

I appreciate your response and will post on here when I have next steps

Thanks

Nicki

[Wendy0493]

Hi Endonaw,

I am so sorry to hear about your pain, and when we are in that position day after day, it is really tempting to go with what we think is the quickest route to get out of it! Unfortunately its not that simple. My mother had a hysterectomy, after 30 years of chronic stage iv endometriosis, and was never the same afterwards. She was forever saying "never trust doctors, do your own research or get them to sign a letter confirming the results they promise". Her main issue was the return of endometriosis after the removal of her womb and ovaries and her immediately being thrown in to a hellish menopause. But she was never able to enjoy sex (they shorten your vagina) or have an orgasm again and had continual severe bowel and bladder problems and thinning bones. We need our womb and ovaries. The womb is not just a 'baby bag'. This organ is essential for the heart but also for our internal scaffolding/structure within our body.

You have cancelled twice for a reason. Listen to your instincts. There is another way (i say that to give you hope as I have healed myself from severe endometriosis and adenomyosis and in the process of creating info to share with women to heal themselves to).

There are a lot of horror stories online about the robot da Vinic operations going terribly wrong so read up as much as you can. Empower yourself with knowledge. I would strongly recommend in addition to speaking to your doctor/surgeon again is to go on the Hysterectomy Education Resources & Services (HERS) website. It is jam packed with facts about hysterectomies and all the horrible irreversible side effects. I read their book and it firmly put me off any temptation to have a hysterectomy and forced me to search for alternative ways to heal myself.

If you need any other help please message me but I wish you all the very best with your decision whatever you decide.

Wendy xx

[Endonaw]

Hi - thank you for all your comments and advice. this has been a long process for me - diagnosed with Stage IV at 25 (I'm now 43) and following a lot of intense research over the last 16 months (and your help with additional questions I hadn't considered) and a lot of time with my consultant going through my experience of ENDO and the surgical and non-surgical options I opted for a total hysterectomy with BSO. My very talented surgeon used the DaVinci robot so although the operation was nearly 5 hours long he was able to do the hysterectomy with full endo excision. It is early days, and I am taking each day at a time, but my recovery has been remarkable - I have had no pain since surgery, not needed any pain killers, I don't feel like anything is missing from my body (not sure what I expected!), and I haven't had any menopause symptoms as I was put immediately on combined HRT. The only weird 'sensation' is my bowel and bladder (both working fine) as they settle back down as they were both excised from Endo. I also don't have any emotional side effects (yet?) from the surgery - something that I was extremely worried about as we don't have kids, and I didn't know how I would be with it being so final.

I know my decision isn't right for everyone, but the key for me was to research it from every single angle (surgical v non-surgical, risks, long term health, pain v quality of life etc) and so I went into hospital extremely anxious, but well informed. Who knows what the future will bring, but as I sit here today writing this, I can honestly say that, whilst still in recovery and not back at work, I feel better than I have in years and I feel positive that it couldn't have gone any better (thanks to my amazing Consultant).

Thanks for all your help as I made my decision

Kind regards

Nicki