Hi ladies, well after years of battling my consultant says my only option is a hysterectomy which I have now agreed to for piece of mind that its not all in my head.. Sounds crazy but after years of pain etc and my consultant saying he's 99% sure it's endo but doesn't want to go in and end up giving me more scar tissue (had c-section and appendix out) of had enough and have agreed to the subtotal and endo lazer treatment ( if there is any) I guess after all this time it will just be piece of mind to know wether it's there or not ..sorry for waffling I'm just very nervous and some advice of anyone who's had this done would be helpful...I.e- what's recovery like? If it is endo cud it come back on different parts? I've come on here because time with my consultant is limited and I feel i never have time to ask everything...Thanks x
Subtotal hysterectomy : Hi ladies, well... - Endometriosis UK
Subtotal hysterectomy
hi, can I ask why you will be having the hysterectomy?? Have you had a lap before for Endo? I understand the scar tissue problem but wonder why they recommend that course of action?? I have Endo and pcos. I have had laps and various treatments but to no avail. No periods for half a year....pain up and down. Only way I see out if it is a hysterectomy. Hard decision to make.
Hi.. No lap was done. I've tried all other avenues according to consultant. He won't even entertain a lap he says it will cause more damage. I trusted that advice, now I have ladies with obvious experience of endo telling me I need to ask more questions. I think that's what I need to do first if he won't listen il go somewhere else. The ladies on here are saints they really are... X
Hmmmmmm well it seems a bit heavy handed to go in to that option straight away. Do you have BUPA or the like?? I had my second lap privately. Worth it for peace of mind for me. At 29 that is young to have such a big life changing op.and various implications of it. At 35 I feel too young but you need to balance up quality of life too. If I were you I'd get 2nd opinion. Whose to say it could not even be gynae related without even an exploratory to confirm it! Hugs.
Ask yourself this - if pain is caused by endometriosis which is attached to other organs - bowel, bladder, intestines, the wall of the abdomen - how will removing the womb and ovaries help?
When your ovaries are removed, you are given hormone replacement therapy to protect your body (in very basic terms) and other areas in the body automatically produce oestrogen to compensate anyway. Endo feeds off oestrogen....
There are ladies who have had their lives changed by hysterectomy. But there are equal numbers who have gone through a huge, life changing procedure for just a few short months of relief before the endo floods back. What are the surgeons going to recommend as a last resort then?
This is a HUGE decision, and you shouldn't be taking advice based on other women's experiences. If needs be, make a double appointment with your consultant and MAKE him/her explain all of the potential outcomes to you. Because it will be too late after the op...
Good luck
C xxx
Hi thanks c, I literally can't get appointment , I've tried.. All I get is that he's busy. I'm just trying to come to terms with it and I'm losing sleep already. I'm 29 and have 2 children and know I don't want anymore. Consultants reaction was that I have a family and gel only go in to do a hysterectomy.. I agreed because I want an end to the pain . Really struggling with it all now x
Oh love, you poor thing 
29 is no age to be dealing with all this crap.
And without wishing to scare you it doesn't sound as if your consultant is the best person to be giving you advice (let alone issuing ultimatums) when he's not even diagnosed endometriosis! It could be literally anything causing your pain - he may well think that your symptoms best match endo but performing a hysterectomy on a hunch is irresponsible at best!
Do you have a good relationship with your GP? My bet is that if you go and see him/her and tell them what this consultant plans to do on the basis of absolutely no diagnosis they will be horrified. As you probably know, the amount of endo you have doesn't always correspond with your pain level - I was stage 4 when I was diagnosed but I only found out because a cyst burst on me; before that the monthly pain seemed to be the same as ladies with 'normal' periods and other ladies have only a tiny patch of endo and are in excrutiating pain all the time. Imagine if that's you, that you just have a tiny patch of endo that could be lasered away, even if only temporarily because as we all know, it's persistent, and he goes in there and whips everything out anyway...
Go to your GP and ask to be referred to somebody else for a second opinion. It's your right, but more importantly it's your body. You wouldn't let a plumber rip out your whole central heating system because one radiator needed bleeding....
Good luck lovely, and lots of love
Chrissie x
It is important to find out why they have recommended a hysterectomy, as there is still some old school medical thought that says that a hysterectomy is the cure for endo, particularly amongst general gynae consultants, who are not always the most experienced in dealing with endo as it is just a string to their bow. Obviously some have chosen to particularly specialise in endo but these tend to go onto be endo consultant surgeons rather than remain general gynae.
I was lucky enough to see one of the top endo consultants worldwide and his view is that a hysterectomy only helps where endo is actually in the uterine muscle (known as adenomyosis). It is also helpful for other gynae problems such as heavy menstrual bleeding, fibroids etc. However, endo is commonly found elsewhere in the peritoneal cavity and this must lso be removed.
Does your consultant think you have adenomyosis, which will be helped by a hysterectomy? Not everyone who has peritoneal endo will have adeno. It is important to be clear that this is what your consultant suspects and is not just of the old school who thinks a hysterectomy cures all.
It does sound like your consultant is intending to laser any other endo found. However, it is also recognised by endo consultants that excision of endo (cutting it away) has a better long term result than laser which burns endo off the surface. He explained this to me by using the analogy of gardening. If you cut a weed down from the surface (i.e. laser) the roots can remain underneath and, although they will not come back up for a time, or in the same spot as laser creates scar tissue, it is possible over time to re-emerge elsewhere. Excision surgery takes the roots out also so it is less likely to cause any further problem. The reason ladies often end up going back for multiple surgeries, despite having endo excised is because most surgeons only do 'patch excision' and do not remove it all. These patches removed have a good outcome but problems may arise later from further endo that was not removed. The top guys advocate removing all endo and not just patches here and there.
I was originally told by a gynae consultant that I "was a total mess" and a hysterectomy was my best option. I did research and came to the conclusion this was not necessarily the case, unless I had adenomyosis. Adenomyosis cannot be confirmed100% until after a hysterectomy and a biopsy is done. It can be suspected from a bulky womb but this can also be due to fibroids, and sometimes just how you are.
I decided not to have a hysterectomy but underwent pioneering endo surgery called "total radical excision". This is where the whole lining of the peritoneal cavity is excised. I also had the Pouch of Douglas (recto/vaginal) pocket completely cleared . The op was all done keyhole and took c8 hours. This ensured that as much endo as possible was removed all in one go. It heals more cleanly too, more or less giving you a new peritoneum. I can honestly say that I have been fine since (3 years) with no signs to-date of any abdominal pain at all. Best periods I have ever had too. He did suspect I might have adenomyosis as my womb was bulky but I decided to have the radical excision done first to see how I was after that and, if still getting bad monthly pain, go for the hysterectomy. I have not needed it to-date.
Just make sure your consultant is an endo specialist and that he is recommending a hysterectomy for the right reasons. I am sorry if this will unsettle you but I think it is important to be informed and to make such a choice not in haste but with having looked at all the options and facts.
It is also thought that Estrogen Dominance may contribute to the increase in endo in modern times due to all of the chemicals we daily plaster ourselves in with toiletries, cosmetics, cleaning products and plastics used in the food packaging industry etc.
I recommend the following books:
Estrogen Dominance by Dr Michael Lam
Stop Endometriosis and Pelvic Pain by Dr Andrew S Cook.
The latter will particularly arm you with information for discussion with your consultant.
All very best wishes x x
Hi thanks for it reply.. Give a lot to think about there. I've only seen my consultant once and he recommended hysterectomy straight away - all my other appointments have been with his under studies. I'm totally freaked now. Not sure what to do for best. I've been fighting for a long time and I guess I just accepted this was the way.. Hmm x
Hi there
I have seen my consultant this week and I am also due to undergo a hysterectomy as well as cutting away the endo. It seems highly likely, due to my symptoms and pain that I have adenomyosis ( endo on the muscle wall of my uterus) and that is one of the main reasons to go ahead with this big op! I am starting hormone injections to hopefully thin down the endo whilst I'm waiting for the op, and also hopefully lessen the pain I am in. My consultant has explained everything very well to me, and after undergoing ablation and two laps and no reduction in pain over the years, this now seems the best option for me. I am worried about the op, but am hopeful this will settle down the awful pain I am in! I wish you all the best angelswings84, please keep us up to date with how it all goes!
Take care xx
Thank you Adele , when are u due ur op if u don't mind me asking? X
Hi angelswings84
I am probably looking at within the next 3 months and am due to have an ultrasound within the next 4 weeks hopefully.
xx
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