Hysterectomy

[sumul]

Hi ladies,

Hoping for some tips /advice! ?

I'm having a hysterectomy on 18th June after being diagnosed with severe endo.

Any advice for after care??

Thankyou all in advance xx

[uplivity]

Hysterectomy for Endometriosis? Do you mean Adenomyosis? Hysterectomy does not 'cure' Endo, only Adeno. Endo has to be surgically removed from those structures that have adhesions. I'm having Hysterectomy for Adeno as well aa extensive excision work & small bowel re-section due to recto-vaginal & ureter involvement (of Endo). Endo = adhesions outside of the uterus.

[sumul in reply to uplivity]

Hi, adenomyosis has not been mentioned to me? All I know is my womb is attached to my bowel and needs separating. I did have some relief on zoladex but consultant feels that a hysterectomy is my best option.

[katrina1234]

Hi, sorry to hear you are having a hystetectomy. I had a total laparoscopic hystetectomy 15 weeks ago (ovaries,tubes,cervix and uterus removed). I brought a 'V' shaped pillow which made resting comfortable. The most uncomfortable part for me was the bowel pain and spasms especially rectal area. So I aimed to have a really gentle walk with a family member about a week after op - just walking around the garden/neighbourhood to start with. Once I felt stronger I walked further, building it up when I felt ready. I had peppermint tea (yuk) which did help with abdo/bowel pain and tried to eat well although I felt nauseous the first few days. I also drank plenty of water to lower risk of urine infection. My GP suggested Floradix - a herbal vitamin tonic from health food shop/some supermarkets which I am still taking. It is also important to rest. I read so many books. I had friends to visit for an hour and family did the cooking and housework. Don't rush back to work. I had 14 weeks off but I had afew problems. As someone pointed out to me - you might look ok but you are still healing inside.

It is also important to do any pelvic floor exercises the physio gives you and take pain relief regularly. I bought a book from the UK Hysterectomy Association to help. They also have a lot of advice and I found it helpful. Please pm mr if I can help with any questions at all. Good luck.

[sumul in reply to katrina1234]

Thankyou so much for the advice. It's really helpful. Hope you are well and I will certainly take on your advice x

[katrina1234 in reply to sumul]

Happy to chat anytime. Lots of interesting comments on your post!! I had a hystetectomy for severe endo and enlarged and irregular uterus. The pathology of the uterus showed Adenomyosis which was not picked up by ultra sound scan by a specialist doctor. Keep me informed of how you are.

[sumul in reply to katrina1234]

Thankyou Katrina. Will do. Take care x

[Marcia71]

Hello

I had a total abdominal hysterectomy and both ovaries removed (BSO) in Febraury 2015 due to endometriosis and a misshapen womb so was for more than just endo.

They didn't take all endo out at the time - my gynae believed it would die off once ovaries gone! So I had to have laparoscopy in November to take that out and all adhesions op created.

Make sure you have lots of help after the op for at least the first 3 to 4 weeks. Seriously you won't be able to lift a kettle for the first few days! Rest lots and sleep when you need to but do get out for a short walk each day and build up to be walking say half an hour. I'd suggest going onto hysterectomy associations website and see their recovery guide and read their online boards as loads of help and advice and you can join a group of ladies going through the op at the same time as you. It really helped me and got me through the last eighteen months.

Take care and do ask any more questions

M x

[sumul in reply to Marcia71]

Thankyou so much. I am glad you are well. I will look for that group! Take care and Thankyou for taking the time to reply x

[Hidden]

Hi there,

I believe it is your choice for the hysto and you are to be applauded for having the courage to go ahead with it, as you know your circumstances best.

I am holding off on mine-im 42 just want to see how many laps I can handle before we step it up lol.

Had my first lap in march and am 11weeks post op from endo excision.

I would say to have meals planned for us that was the biggest thing.

We made up dishes and froze them for my husband to prepare.

We made mash once a week and made up five containers approx and froze them as mash is what takes the longest.

Hot water bottle or wheat bag mate you will need it.

Try to get up and walk as often as you can to minimise scar tissue from the op and get you on your feet.

Lost of reading material and movies in reach.

Something I would call a hand grabber or claw believe me it was the best thing I ever bought as you have no idea how many times you drop things and cannot pick them up and have to call someone-about 5 bucks from the cheap shop.

Put things out before surgery that you will need at a height you can reach them-shampoo, hairbrush,shower gel as you wont be able to bend for a bit.

I would hazard a guess that you have made the decision because your uterus is involved somewhere with the severity of endo and I would love to hear your progress.

Kind regards

Rose

[sumul in reply to Hidden]

Thankyou Rose. im 40 and from what I know my womb is quite bad with endo and stuck to m bowel. Great advice and will certainly take it on board. Will keep in touch x

[Brownlow in reply to sumul]

Hi Sumul, when you say your womb is quite bad with endo are you saying you have adenomyosis confirmed and if so how was it diagnosed?

[sumul in reply to Brownlow]

Hi. My consultant said that my womb was still attached to my bowel after my last laparoscopy. He removed sone endo and a cyst and separated my ovaries and bowel but that most of my pain now is due to my womb and bowel attachment. Adenomyosis has never been mentioned to me. X

[Brownlow in reply to sumul]

A skilled endometriosis surgeon should be able to separate the womb from the bowel unless there is some extreme complication of which I am unaware. I had a 'frozen pelvis' which is basically everything stuck to everything and all my organs are in tact following my op. Are you in the UK?

[sumul in reply to Brownlow]

Hi Brownlow, yes I'm in the UK. From reading all the posts it seems people have different experiences. I feel very lucky that my doctor has supported me so well as has my consultant. I trust them completely. I'm hoping that this will be the right step for me as it is for so many women. But Thankyou so much for your advice . I really have appreciated it x

[Brownlow in reply to sumul]

At the very least, please make sure that your surgeon is an accredited endo specialist and appears on this list bsge.org.uk/centre/ If this is not the case, please get referred to one as these centres have specialist teams with colorectal surgeons experienced in endo. You will need a colorectal surgeon from one of these centres as you have bowel involvement.

[Brownlow in reply to sumul]

I have just come across the most recent longterm study of the effects of endometriosis and it's not pleasant reading. endometriosis.org/news/rese... The results suggest that having endometriosis may increase the risk of heart disease. Note the words 'may' and 'suggest'. It does not mean that you will get heart disease but in 2012 cardiovascular disease, which includes heart disease, was the leading cause of death in women in the UK. (For men, cancer was the leading cause in 2012).

The researchers suggest that this increased risk could partly be attributed to the number of hysterectomies conducted for endometriosis. It is known that the uterus is heart protective. The Framlingham Heart Study established that simple premenopausal hysterectomy with preservation of functioning ovaries was enough to eliminate protection against heart disease.

Make sure that blood flow to your heart is monitored regularly and take prescribed drugs to increase flow if it becomes compromised.

[Brownlow]

Change your doctor. A hysterectomy is not necessary for endometriosis. Proper surgical excision by a skilked endometriosis specialist is the only surgical intervention that has a chance of overcoming endo. A hysterectomy is only necessary if the uterus itself is diseased in some way e.g. adenomyosis, cancer etc.

There are accredited endometriosis specialists but some are better than others and some still recommend hysterectomy. A hysterectomy and oopherectomy was recommended to me by one endometriosis specialist but I got a second opinion and had my frozen pelvis sorted out; stage 4 endo, cysts on ovaries and fibroids surgically removed by a better more skilked surgeon who was baffled as to why a hysterectomy and oopherectomy was recommended. We concluded that it came down to skill.

Removing the uterus comes with risks and side effects all of its own, some of which manifest years later. Hysterectomies are conducted to readily and are unnecessary. Whatever you do, hold on to your ovaries.

[Hidden in reply to Brownlow]

Can i ask brownlow,

How are your pain levels now?

Did your choice of surgery for the frozen pelvis etc.improve things for you?

It does come down to skill definately.

Rose

[Hidden in reply to Hidden]

Can i also ask to brownlow

Did you go with your own natural cycle after any ops or did you go on a form of contraception

I have had the excision,but they wld like to put me on the pill now.

I feel im a bit old at 42 to start on that rubbish again,my jury is out as to whether it helps slow it down or not?

Rose

[Brownlow in reply to Hidden]

Massive improvement in pain levels 1 year post op. I think an ovarian cyst could be forming but a hysterectomy i.e. removal of uterus alone, won't prevent that. Removal of ovaries seems like cutting your nose off if you get frequent colds. I use drug free methods to manage and I'm just about to start looking at cortisol levels, blood sugar levels, steroid drug levels etc. with a view to developing a tailored protocol for myself and not a 'one size fits all' pill.

I did not take contraception pills or get IUD following surgery. That's a bit like saying "I'm not a very skilled surgeon so the chance of your endo returning is high". Sadly, good surgeons are hard to find and even then there are no guarantees. Contraceptive pills might work in the short term but long term I feel that problems are being stored up for the future and there are serious risks that people tend to gloss over. I don't care how 'small' the risk is but I'd rather not get a blood clot. The pill also reduces the ability to absorb certain essential nutrients and doctors will rarely explain this. Plus it affects the gut bacteria in a negative manner often giving rise to candida so I hear. I could go on but I'm sure you can see my point of view.

[Hidden in reply to Brownlow]

Dear brownlow,

I couldnt have put it better myself

Everything you said re vitamins like absorption of b vit is what i thought.

I feel your immunity is compromised more on the pill,and given there is an auto immune component to endo i cant see how it helps.

My jury is out as to retrograde flow being the sole cause of endo.

I dont believe it is,its the bodies response to it.

Thank you for firming my resolve to say no to it.

Im glad you have found some relief.

Kind regard

Rose

[Brownlow in reply to Hidden]

Rose1974, I'm so glad that you have discovered these things. Knowledge is power and it is only when we have a broader view of all the information that we can make decisions that suit us personally. Doctor's either keep that information from us or they simply don't know all the facts themselves etc. which is disempowering to women.

I don't have any time for the retrograde flow theory which was proposed in the 20s or 30s. It's a good theory but the majority of women have retrograde flow. Also, certain aspects of the nature of endometriosis tissue and how it implants differs from endometrial tissue. My feeling is that it starts as irregularity during the foetal stage of our development and is triggered by our environment, particularly endocrine disrupters and chronic unresolved stress.

I'm glad that you have made a decision. Nothing worse than uncertainty. And watch out for those stress levels! x

[Hidden in reply to Brownlow]

Many many nights of lying awake reading till 3 am since march 9.

I only joined a couple of days ago when i felt i had read as much related literature as i could find.

Im over the shock of it,ive got a better handle on it.

Its the younger ones i worry about.

They have such a long way to go.

R

[Travelling]

I second what Brownlow says sumul, hysterectomy is not the correct treatment for extensive endometriosis. Have a look online at bsge.org.uk (British Society for Gynaecological Endoscopy) where you will see that there are new guidelines about how this is to be treated. There are now accredited local specialist centres which are listed on that site. All NHS and with some very good Gynae surgeons who work together with Bowel surgeons because both are needed when the endometriIsis is all around the abdomen, it can infiltrate the gut (this is the case for me).

It seems like the word has not got around yet though among jobbing gynaecologists and so I saw a non-specialist Gynae who could only offer drugs or a hysterectomy. I did a little research and saw that she was very out of date in her approach.

Even if the womb is removed the remaining abdominal patches of endometriosis will continue to cause pain, scarring and adhesions.

Good luck and keep looking for the best healthcare for yourself!

[sumul in reply to Travelling]

Thankyou x

[Brownlow in reply to Travelling]

Well said Travelling! We have to dispel this damaging myth that hysterectomy is in some way a cure for endo. When performed along with removal of the ovaries it amounts to castration. I cannot fathom why anyone would opt to be castrated unless death was imminent and I'm saying that as someone who was in immense and debilitating pain so I know how bad things can be.

[Travelling]

To Rose1974, It's my understanding that there is no evidence that the "Pill" helps these conditions or similar ones. It may be that docs base this approach on the mistaken idea that the Pill "switches off" the cycle, which is doesn't really, it simply replaces the body's natural hormones for a synthetic one, progestogen, which is chemically most similar to testosterone. Make of that what you will, but it replaces one set of problems with another by many anecdotal accounts.

[Hidden in reply to Travelling]

My thoughts exactly unless your knocking out the estrogen,i cant see a benefit.im about to tell my gyny that on thursday.

I realise you have less periods but id rather deal with that then complicate it worse.

Thanks

Rose

[Angelclaire]

Hi

I had a Mirena inserted after my lap 3yrs ago to help stunt re growth also had one tube and ovary removed, the other ovary was retained but in order to preserve it endo was left present. Following careful monitoring last month it was confirmed the ovarian endo has been successfully removed by the Mirena.

I am currently on Prostap and will be having a total hysterectomy including my remaining ovary later this year. I have Adenmyosis also and currently have back and bowel issues due to my womb being pulled back (attached to rectum).

My specialist is a bsge and has spent 3 years trying to avoid a hysterectomy but feels now is the time.

I don't find peppermint tea offers much relief but 1-2 drops of peppermint oil dissolved in around 50-100ml of hot water is a god send. It's hard to come by so ask the hospital pharamacy for some before you are discharged or failing that I recently found some in Holland and Barret for around £6

Good luck and rest up

[sumul]

Hi,

Thanks so much for taking the time to share you experiences. It sounds like you have been through it! I hope it all goes well for you and hope I'm making the right choice also. My back also becomes terribly painful where walking or sitting is unbearable!

However, my consultant who is also BSGE is wonderful and as I said before I do trust him. Do take care, I hope it all goes well!

x