Full Hysterectomy due to Endo


I was diagnosed with endo in 2005, had various surgeries to fix and a 6-month round of zoladex.

I'm now having to have a full hysterectomy due to endo and other gyne issues. Also may end up with a second surgery due to the belief that my uterus is also plastered to my bowel.

Have any of you had to have this operation? I am lucky enought to have been able to have 2 beautiful children so the removal of the anatomy (while sad) is manageable from a mind set perspective. However, I have read numerous scare stories in the Internet that says I will be a sexual mute once I have the op with no ability to be aroused or have any sexual pleasure or release... That would probably put a whole bunch of strain on my marriage and I'm not prepared for that to happen.

My operation is on 27 June 2016 with Andrew Kent - Royal Surrey. I would be really pleased to hear from anyone who has had that operation and can assure me that you don't become just 'numb' from the waist down afterwards. I'm so terrified of this.

Also, if anyone has been operated on my Andrew Kent, would be good to hear from you too. This is my first time going under his knife.

Thanks in advance,

Susan X

9 Replies

Hi Susan

You say it is believed that your uterus is adhered to your bowel. What evidence is this based on - have you had an MRI and does it show a retroverted uterus with dense adhesions obliterating your pouch of douglas? If so then you will have deep rectovaginal endo which they should already be aware of - have nodules been felt on rectovaginal exam?

Do you have troublesome fibroids and/or adenomyosis (endo within the uterus) that means a hysterectomy is indicated and is it proposed to take the ovaries too? If so how old are you?

Why are they proposing two surgeries? Assuming a hysterectomy is being proposed for the right reasons (ie due to the uterus itself being diseased) and the rectovaginal endo/adhesions are symptomatic then the procedure should be carefully planned beforehand on the basis of the pre-operative tests such as MRI so they will have a pretty good idea of what is involved and all endo/adhesions should be excised at the same time. The only protocol for two surgeries is if endometriomas (ovarian endo cysts) are involved in which case the NHS contract requires a first surgery to drain and strip out endometriomas (and to stage the endo) which should be followed by 3 months of GnRH agonists such as zoladex/prostap followed by the main surgery to excise all endo and adhesions. If a hysterectomy is warranted this would be a part of the main surgery.

With regard to sexual function this is all dependent on not damaging the nerves involved (eg pudendal/vagus nerves) and will be down to the skill of the surgeon. But a skilled surgeon should be very aware of the importance of the preservation of such nerves. I really don't know what sort of statistics there may be about this and whether there may be a difference between total and sub total hysterectomy - ie whether retention of the cervix may be beneficial.

We are not allowed to discuss surgeons but the NHS contract requires that this sort of complex surgery is only carried out in a BSGE accredited centre.

Thanks for replying! I'm 42 with a history of endo and mennoreah. This has been managed in the past with surgery, a 6 month course of zoladex and 2 insertions of the mirena.

I have had a consultation with the consultant who has told me that I have a problem with my cervix (mirena coil is stuck on some nodule on it due to previous laparotomys) I need the tubes, ovaries and uterus out. Due to the pain I'm experiencing he thinks it's because the uterus is stuck to the bowel. He explained that he won't know for sure until he operates. If it is, he will take out the endo and what he can and he and a bowel surgeon can do a second op later.

I'm pleased with what you said about the sex feelings and I will make sure I point it out to him when he operates 😊.

Susan x

Hi there, I had a hysterectomy in July last year for adenomyosis I also have Endo, and had excision surgery in march last year, unfortunately I'm still in pain and am now awaiting another laparoscopy with a bsge centre, as I believe my surgeon has missed endo someplace ,

Due to still feeling unwell I don't make live as often as we used to not do I enjoy it as much, but thus is due to pain after and I still get aroused and still have Orgasm's but it sometimes.e s can take abit longer

The only thing I would say is make sure all your endo is removed at the same time, so you can get a good chance of getting the best from the hysterectomy

Good luck xxxx

Hi there and thanks so much for responding. I'm sorry you're still in pain, that must be disappointing.

He is going to remove everything and the endo in the one op, but he thinks he might need to do a second op with a bowel surgeon if his suspicions of the uterus being stuck to the bowel is correct.

I am so happy to hear that you are still able to feel aroused and have an orgasm 😁. My consultant is supposedly one of the best in the country and is an endo specialist so I really hope he gets it all!

All the very best with the remainder of your recouperation and best wishes for your next op.

Susan x

If you were having surgery at an accredited centre it would be a requirement for a bowel surgeon to be involved from the off when bowel involvement is supected, which is usually confirmed by MRI and/or digital examination so presumably these have shown inconclusive results. It is important that the number of surgeries is minimised. The European guidelines (ESHRE) are clear that all endo must be excised at the same time as hysterectomy and this includes rectovaginal endo. I'm not sure why he is going against the BSGE specification but obviously it is for you to choose who operates. Endo UK supports the BGSE centres though.

My consultant has advised me that if he needs to operate on my rectum he will have to do that in a separate surgery as my cervix will be removed and there is then the risk of the wound of the rectum to heal against the wound of the vagina, fusing both organs together which makes sense to me and which I am not willing to risk. There is no indication that I do have endometriosis on my rectum, but that is something he made me aware of.

Thanks for this. He has done a test which inserted a camera into the cervix to have a look around. I had a few scans done but no MRI. I don't know what that accredited centre is? I'm being seen at the Nuffield Private Hospital under BUPA by Andrew Kent. He seems to be an expert of the endo surgery. Have you heard of him?

Yes, but he is not BSGE accredited. The BSGE is the British Society of Gynaecological Endoscopy and all NHS surgery for what is described as 'severe' and defined as stage 3/4/rectovaginal endo must be done in such a centre in accordance with the NHS England contract for treatment of such cases. All work carried out at these centres is monitored (for example examplar videos of rectovaginal dissections have to be submitted and confirmed as up to the required standard in order to maintain the accreditation.) Such surgeries should be undertaken by a team working together of two gynaecologists (at least one of them advanced at excision) and a colorectal and urology surgeon when required. The need for these other surgeons would have been established beforehand by preoperative tests such as MRI and all will have got together to discuss and plan the surgery in detail as required by the contract. This is not to say that a few non-BSGE surgeons may not be as competent as some of the BSGE ones but the requirements are that such work should only be done in centres. This does actually apply to surgeons working privately as well since the requirement to undertake complex surgeries in multidisciplinary centres is laid down by RCOG (the Royal College of Gynaecologists) and all gynaecologists are registered with them in order to practice and must abide by their guidelines. Since your surgeon operates outside the BSGE it will be down to you to assess whether he is of the required standard - for example have you asked for his complications data for such complex surgery such as recurrence and colostomy rates. You could join a facebook site called Endometropolis as they are allowed to give feedback on surgeons.

Consultants may have their own personal methods but I can only comment on what is recommended. In most complex excisions there will be many wound sites, for example when the bowel is already adherent to the cervix in rectovaginal endo and they are separated. I think it will be more to do with the surgeon's skill and excision method used, e.g. mechanical or laser, that may influence the likelihood of adhesion formation and the adhesion barriers used against the risks of adhesions with multiple surgeries.

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