Got a date for total hysterectomy, feeling scared and having second thoughts..!

[Edsmom]

I'm taking the mini pill (POP) I don't have periods and my pain level has dropped because of this. Im now considering delaying surgery and seeing how things go. It's taken a long time to get this far, difficult decision!!! Help

[Sheri26]

Is it poss for you to put it off for a month or two, I think only you Can decide what to do for the best , I've just had a hysterectomy two weeks ago, I'm okay and nothing to be scared of x

[Edsmom in reply to Sheri26]

Thankyou for replying and I hope you have a speedy recovery.

[gela217]

I've just had a total hysterectomy.... I did as much research reading has I could. Questioned over and over the doctors. I think I even almost drove the consultant mad. Tried to prepare my self mentally. Prepared my home. I told my son I was scared hours before surgery. He asked what I had to be scared of...... I didn't have to do anything just lay down. The consultants do the work.

Just be sure it's right for you.

[Edsmom in reply to gela217]

Thankyou for replying and I know what you mean about reading, researching etc...I think I'm going to delay surgery for practical reasons ie my parents are on holiday soon, I'll need their help with my children whilst I recover. I appreciate your advice.

[Ballerina335 in reply to gela217]

Hi gala217

I am due to have laparoscopy Hysterectomy and bilateral oophorectomy in three weeks . I am still trying to piece together the scrappy bits of information that I have been given at short consultation in January.

I have some questions for my pre op assessment. Gela217 can you give me any pointers to questions and research . I feel you have felt the way I am feeling and I would like to feel less disempowered.

[stevieflp]

I guess it all depends upon the medical rationale/reason you have been recommended a hysterectomy. Even though I chose not go go with it, I personally have nothing against having a hysterectomy if it is for the right medial reasons and will benefit you.

The endo experts say that Endo (which is generally of the peritoneal cavity) and Adenomysis (endo like growths in the uterine muscle) do not have the same origin and do not necessarily migrate one into the other and so are separate conditions; albeit ladies who have peritoneal endo, do sometimes have adenomyosis also. Adeno is difficult to 100% diagnose before hysterectomy and is generally only suspected following manual palpation / MRI showing a bulky uterus (but that could also be fibroids) and from symptoms (if the consultant is experienced enough). Apparently both of these conditions have different pain symptoms/characteristics. Very difficult though when you have widespread abdominal pain to be able to always be specific about the pain as it can be changeable. This is why it is important to keep a pain diary over time so that trends can be spotted.

Hysterectomy is useful for Adenomyosis, not for peritoneal cavity endo. . Oophrectomy - removal of both ovaries is also not recommended by the endo experts, not for endo purposes anyway, only if the ovaries have ceased to function due to damage or something more serious like ovarian cancer. Endometriomas can generally be removed by a skilled endo surgeon and ovaries can be prevented from re-adherance by a technique called 'Temporary Ovarian suspension", sadly not all surgeons treating endo (particularly the gynaes) seem to use this technique and I have seen ladies being told 'might as well remove ovaries as they will only get stuck'.

Hysterectomy would be a sound call if you do have adenomyosis, or if you have some other gynae condition that would benefit from a hysterectomy for example, exceptional heavy bleeding or fibroids (but even then fybroids can often be removed without a full hysterectomy).

If it is because you have been told you have endometriosis and it is widespread within the peritoneal cavity i.e not adenomyosis but endo in the peritoneal lining / on the bowel/ bladder/ pouch of douglas etc, then a hysterectomy will not remove that endo. You would still have it after the op. The endo expert consultants say the best way to deal with peritoneal endo at the current time is to have it removed by excision surgery. If you have both adeno and peritoneal endo then a hysterectomy would need to be in conjunction with peritoneal excision to be most beneficial.

I am sorry if this may unsettle you further with your decision making but it is certainly the same turmoil I went through when i was told by a general gynae that I was a "total mess" and a hysterectomy/oophrectomy was my best hope.

It also pays to look into the background and specialism of you consultant as you tend to get recommended treatment in accordance with their skill and experience, rarely do they admit you would be better off with someone more advanced and refer you onwards. I researched the background of my first consultant (which turned out to be specialising in hysterectomies - later admitting that "they only do a little bit of excision surgery" - clearly not one of the most advanced endo surgeons then) even though they advertised at treating endo!

Are they a general gynae or are they a specialist endo consultant who has undergone additional training in the surgical management of endo. That is the first question I would want to know.

Although I had suffered painful periods for years (and yet the contraceptive pill did help) and adeno was suspected, I opted for total peritoneal excision instead with the rationale that if I still had really painful periods after all peritoneal endo had been removed and things settled down, then it was highly likely that I did also have adenomyosis and then could have gone back for a hysterectomy at a later date. I have been fine since (3 years 3 months with no endo symptoms and normal periods).

Sorry for the long response but it really will depend upon the background of your surgeon and the reasons/medical history of why a hysterectomy has been put forward as treatment for your pain.

All best wishes x

[Edsmom in reply to stevieflp]

Thankyou for your detailed response which I'm grateful for. I'm heading down the route of hysterectomy after exhausting all other treatments over the past 2 years. I've had 2 surgeries both to excise endo...I've had Zoladex and HRT also (previously a mirena coil too has been tried). My consultant did an endometrial ablation last May and womb lining has grown back, I've been put on the mini pill and I've stopped having periods, but grown an ovarian cyst now. That's pretty much what has led me to this point. I have endo on bowel and ureters, which I know won't be helped by hysterectomy and removal of ovaries necessarily. The consultant I have is an endo specialist and I trust him, however there are so many questions spinning round my head!

[JennieJo]

I had hysterectomy and ovary removal for endo, adenomyosis and recurrent ovarian cysts a few years ago. I don't regret having a hysterectomy at all however do wish I hadn't had my ovaries removed. My consultant/surgeon said they were shot to pieces and had to go but I think he was only too keen to take them. Ovaries are responsible for so much in the way of hormones, including testosterone. Although I'm on Livial HRT which is supposed to have a testosterone effect, I've definitely experienced a big reduction in libido and an impact on my sexual identity and I worry about the long term impact on my health. I would think really carefully about losing them, maybe discuss this with your consultant and do some research, especially if you are still fairly young.

[Edsmom in reply to JennieJo]

Hi, I'm 40yrs old so would have to have HRT for a good few years. I know what you mean about loss of libido as am experiencing that now on mini pill. I am worried about HRT and how I'd cope with side affects. Thanks for your advice and sharing your experience with me.

[Hidden in reply to JennieJo]

Hello jenniejo.

Can I ask how old you were when you had the hysterectomy?

[JennieJo in reply to Hidden]

I was 43, I'm now 49.

[Marcia71]

Have a look on the hysterectomy associations website. Loads of useful help and advice for preparing, deciding and recovering. hysterectomy-association.or...

I found that site really invaluable when I had mine in Feb 2015 - had TAH and BSO - but still in pain, so make sure you are being seen by a BSGE specialist who will excise all the endo at the time.

It is a hard decision to make you just have to be sure its right for you.