Appointment with surgeon

[Windancer05]

Hello everyone,

I've managed to get another appointment with my surgeon before my full hysterectomy op on the 23rd of October. I'm writing a list of questions to ask so any advise or things you wished you all had ashes before your operations will be so gratefully received. My endometriosis was only discovered 4 weeks ago after years of pain. I wassto gave a partial hysterectomy because of my fibroids ....now I have both fibroids and endometriosis ....

My bowel is stuck to womb and my ovaries have lots of cysts and I think she said she saw endo on my cervix but when she told me I was shell shocked and didn't ask her anything so I went from being told I need a partial hysterectomy to a full one in 10 mins...

My main concern is my recovery as although my lovely father is doing all he can and my sister will help my father is elderly 80 and still working and my sister has children and her own home life....the thought of being a burden on them is dreadful..... so please any questions you can think if do let me know....also a big shout out to lovely Zzmn....she has helped me so much ....I'm so grateful I found this website now,

With so much respect, understanding and good wishes for you all,

Windancer05

[Judan]

I would start by asking her to show you the results of your tests so far, and can you have a copy to take home (so you can have time to reflect on what it says and research it).

Sounds like they are advising a total hysterectomy and endo excision, so you need to read up on the operations and risks, as that will give you more questions.

You need her to talk you through what they intend to do, risks, intended outcome and recovery.

I was in a similar position, I had a diagnostic laparoscopy in May, nurse said she couldn't read the surgeon writing but she knew I had adhesions, so I made her get the surgeon to call me later to talk me through it. That's when I found out I had Stage 4 endo, adhesions, chocolate cyst and fibroids.

I went private then and consultant sent me for an MRI to check if endo had infiltrated by bowel, it might be something you want to ask for before your op.

I had a TLH and BSI with endo excision on 25July, so just over 8 weeks ago.

I would advise you to cook ahead and freeze meals, as you won't be in a position to cook afterwards.

Don't feel like a burden, your family wants to help and you will need them too, if it was one of them you wouldn't think of them as a burden.

Cleaning and housework can wait, you need to plan to be concentrating on yourself for a good few weeks, your recovery will be about 8-12 weeks

Hope that helps big hugs xxxx

[Windancer05 in reply to Judan]

Hi Judan, a bit late but I hope you see this what is a BSI? I adding to my questions list so just wanted to know so I can ask my consultant...I hope you are recovering well,

Much love

Windancer

[Judan in reply to Windancer05]

Sorry predictive text, I had total laproscopic hysterectomy with ovaries and cervix removed (BSO).

I'm doing well thanks, nearly 10 weeks now. Main problems now are just getting bowels back to normal after endo excision and managing my menopause. Xxxxxx

[Windancer05 in reply to Judan]

I really am praying for you....and will continue to do so. Please do keep in touch, with many good wishes,

Windancer

[Windancer05]

Thank you so much, hxx

[RachaelE]

Ask what she will do to reduce the risk of further adhesions forming post surgery. I too had adhesions between my bowel, ovaries and Fallopian tubes, but didn't know until I came round from the surgery, and wasn't told it was likely I'd get them again after the operation. It got so bad I had to have another operation to divide them. Also ask about granuloma. This is an overgrowth of scar tissue and I got one on my vaginal cuff which had to be excised and cauterised under general anaesthetic. It was misdiagnosed by my GP for six months as a UTI, so look out for symptoms similar to a UTI and ask to be examined if you feel at all unwell. If mine had been caught early, it could have been dealt with by my GP very quickly and simply.

Recovery can take a lot longer than the six weeks most people talk about. Two years it has taken me to feel normal, but hardly ever pain free.

Ask about HRT. A lot of women have their ovaries removed but HRT doesn't get talked about until months after the operation.

Be good to yourself, let other people look after you and listen to your body. You will be very tired during the initial healing process. Go for little walks in the morning and rest in the afternoon. Tone up your pelvic floor NOW and do the exercises every day afterwards. If you develop vaginal atrophy, see your GP for localised oestrogen and YES lubricants. They are the best.

Good luck. Take care and I hope it all goes well. X

[Windancer05 in reply to RachaelE]

Thank you, I really appreciate your advice and the time you have taken to reply...lots of good wishes and lots of prays that even your pain stops now, hxxx

[Gremlin16]

Hi Windancer

Sorry to hear what you are going through and wish you a speedy recovery. I had a total hysterectomy on 26/10/16 with both ovaries removed. Vertical incision due to size of fibroid which weighed 7 to 8 lb.

I can honestly say you will need all the help you can get.

Rest and sleep as much as you need first two weeks I slept a lot.

You can read my posts under Gremlin16 and read my story it may help you.

I went back to work at 7.5 weeks but Dr wanted to sign me off for another two weeks I worked 5 days out of a possible 10 days but had 2 weeks annual leave so he agreed not to sign me off.

I still have to take my time with house work etc and rest when I feel tired.

I do not regret it but have been lucky with menopause symptoms. Only suffer with hot flushes which are manageable no HRT but take Vensir one at night.

[Windancer05 in reply to Gremlin16]

Thank you so much, I so appreciate your advise, 😊

[Windancer05 in reply to Gremlin16]

Hello Gremlin,

I wanted to say a proper thank you for your email. Everyone on here has been so kind. One woman in particular has been amazing.

Now you have come along and are having the same procedure as me with the same incision. I've been concerned about a vertical incision but my surgeon has been amazing and very supportive and also feel heard. She was open to all my questions and explained that whilst she doesn't do laparoscopic surgery she was more than happy to refer me to a fellow surgeon but with the extent of the endo damage and the size of my fibroids doubted even a specialist in lap would do it that way. She is the one who immediately after my emergency hospital stay at another hospital got an MRI for me and discovered the endo. She did all my extensive blood tests and swabs as she couldn't tell why the previous hospital had diagnosed what they had. So I'm sticking with her. I feel safe with her and at no point has she prevaricated nor patronised me. She also runs a endometriosis clinic and will have specialists in other organs standing by for my op.

The operation I'm not really worried about ....maybe I'm still in shock ....it's the recovery. I read your older posts and it is helpful to know what can/might happen. Unluckily I put my back out on Saturday but I went to see an osteopath yesterday...she said it wasn't a split disc thank goodness....I had one last year.....but I've more than likely strained my muscles. I'm keeping all my fingers crossed that I can go ahead with the op though. But I really do not want to be recovering from my op as well as having a bad back.

Please, please do let me know any other tips reference the surgery ....anything you wished you had known before hand or anything that helped you physically,

With much kindness and respect

Windancer