What do you think lovely ladies? - Endometriosis UK
What do you think lovely ladies?
A very good article. More women should say NO to castration... Because that's what it is. X
There seems to be this, to my mind, ridiculous target of living as long as possible regardless of the quality of life.
But from my own perspective quality of life is far more valuable than quantity.
If having hysterectomy vastly improves quality of life for the remainder of life, albeit while potentially shortening the duration, then that has to be a no brainer option.
I can see absolute health sense in retaining an ovary at least, for those who are fortunate not to have BCRA 1 and 2 gene issues or cancer.
And I can see no sense in a hysterectomy simply for endo, but for adeno then yes it has to be a wiser move to remove the adeno cells completely rather than put up with them plaguing you for no really justifiable reason. The same as removing existing endo - wherever it may be, also makes sense. These rogue displaced cells are not doing you any good just harm.
Likewise even if you do not have adeno but have fibroids or excessively heavy periods and are not finding success managing periods with BC hormone methods, then ablation or hysterectomy must be considered as essential steps to improve quality of life.
The time free of troublesome periods that you gain each year by not having periods while young enough to enjoy that free time, far outweighs the risks of a shortened lifespan at the end of your days.
At best each period messes up 1/4 of every year, in reality most of us have longer and heavier periods therefore occupying even more of each year. In my own case periods were tending to be heavy and last closer to two weeks per month. ie 6 months of each year wasted time on periods, Pmt, period pain, bloating discomfort etc.
So say for example aged 40 you have a hysterectomy. 15 years earlier than an average natural menopause.
And say you were losing on average a third of your year, each year to period problems and pains, before the hysterectomy and would do so till menopause without the hysterectomy.
Then having a hysterectomy at 40 would potentially add 5 period free years worth of time to your middle aged life, to be doing things while you are young enough to really enjoy that time and make the most of it.
So if at the end of your days your life is shortened due to the fact you had a hysterectomy causing menopause earlier on, then so what?
You've already gained the 5 extra years when you could make better use of them, so a reduction of 5 later on when you are getting more decrepit with age is hardly any great loss if you made the most of your extra period free time in your middle age years.
All the increases in risks for this condition and that condition are a gamble for sure - but you could just as easily kick the bucket prematurely by being hit by a bus or keel over from sudden cardiac arrest due to an inherited genetic predisposition.
It's clearly a bigger debate that I have time to address here, but to my mind if you have been suffering so much so far and the option of a hysterectomy is highly likely to improve your quality of life and health now, in many ways then it is better to have it done than not.
p.s. I am talking just hysterectomy (uterus) here not TAH which includes bilateral oophorectomy (ovaries).
Yes, excellent reasoning. I just wish they could get my uterus and fibroid in broad ligament out easily and not via laparotomy! Also my doctor recommends removal of my ovaries with large cysts but at least he has listened to me and agreed to excise the cysts and leave the ovaries in.
Thanks Cuddlybarb, that article has just reinforced why I am saying no to a hysterectomy at 36 x
Thanks ladies.
For me it reinforced the fact that we as patients, have to research EVERYTHING!
However I'm in agreement with Impatient. It's all about
our quality of life. I do not want to live until I'm 90 in pain etc. I am happy to die at 75 and have had a better quality pain free life..... Chasing handsome men and generally making a nuisance of myself!
Great article. I have been so much happier since cancelling my oopherectomy. I I don't regret losing the uterus however. I'm grateful it did it's job with my 2 lovely children but I haven't missed it once since it was removed and my sex life improved vastly until the endo pain returned. Not having long painful periods is quite life transforming after years of working round them.
Hi "Cuddlybarb",
Bloomin' fantastic article! This puts into words far more effectively than perhaps I have, the reason why, for years, I have refused to even entertain the suggestion that my symptoms could be "eradicated" by having a hysterectomy. In the past, hysterectomy with bilateral oophectomy has been suggested - I have always point-blank refused.
What I tend to find IMMENSELY DISAPPOINTING in all of this is the fact that such articles PROVE WITHOUT A DOUBT that women know their own bodies well; that women can question; that women can weigh up pros and cons; that women can make astute observations. Where these women are also patients (i.e. have Endo, or another illness being treated by the medical professions), one would hope that such things would be taken into consideration. Instead, what is brutally clear, is that the medical professions operate to a "double standard". this is as follows...
1. Where a patient who lives every single day of their life with a particular illness or condition (e.g. woman with Endo) tells a medical professional that she has concerns about the efficacy of a particular treatment; or has concerns about side-effects; or lists symptoms; or questions a cause... or anything else along these lines... the medical professions tend NOT TO LISTEN. In a nutshell, what a patient says is generally overlooked or marginalized!
2. Where a medical professional (e.g. Doctor/Nurse/Counsellor); who often has NOTHING other than text-book knowledge of a particular illness or condition; says something about it (even if this is incorrect - e.g. "myths about Endo") it is to be listened-to, and believed. It gets written into the patient's notes. It gets passed on to other medical professionals. It forms the basis of diagnoses and treatment. EVEN IF IT IS WRONG! (Perhaps the reason why so many women with Endo are mis-diagnosed, or do not get a diagnosis for years!).
3. Where a researcher; who may, or may not, have personal experience of a particular illness or condition; writes a report or a paper on it (again, even if this is incorrect, or flawed research) it is to be listened-to, and believed. It gets passed on to medical professionals. It becomes part of their training. It forms the basis of diagnosis and treatment. EVEN IF IT IS WRONG! O.k. - the researcher with PERSONAL EXPERIENCE may produce more valid research, so perhaps this is going some way towards the right direction, but...
In a nutshell, the reality is that THE MEDICAL PROFESSIONS PUT THEMSELVES ON A PEDESTAL... what medical professionals and researchers (who may have NO PERSONAL EXPERIENCE AT ALL of a particular illness or condition) say appears to be MORE IMPORTANT and MORE WILLINGLY LISTENED-TO than what patients say!
Before you react in horror, please allow me to add this. I am NOT saying that ALL medical professionals are "bad" - far from it. Like all people, they are a mix; some fantastic, others not so. Some are good listeners; some admit to mistakes; some confess to areas of weakness or lack of knowledge; some refer quickly; some give lots of information about pros and cons and side-effects of treatment; some list all the treatment options; some encourage patient involvement and welcome patients who make informed decisions; some encourage patients to ask questions. Others DO NOT.
Sadly, some of us end up being "treated" by medical professionals who think they are "above" us, or "superior" to us. People who became Nurses or Doctors NOT because they care - but because they want a guaranteed income; or quick promotion; or POWER over another person - or because they went to Public School and "bought" an education; or they have a "family tradition" of doing that job, so used NEPOTISM to get into it; or because they got such POOR QUALIFICATIONS that this is all they could do (and they relied on a family member to get them the job)! Believe me - THESE sort of people exist in the medical professions, just as they do elsewhere. AND IF THEY ARE "TREATING" YOU - WOE BETIDE!
PATIENTS DO HAVE VOICES - they do know what they are talking about. So they DESERVE TO BE HEARD.
IF a patient WANTS a hysterectomy - having CONSIDERED ALL THE FACTS - then they should be free to have one. It all depends on how the patient sees their quality of life. If they think hysterectomy will improve it; if they are content to tolerate whatever side-effects may occur, and think these are "worth it" in order to relieve other symptoms... then that decision is THEIRS.
If, however (as I personally felt) they are unsure, then this is also valid. MY fears about hysterectomy and oophectomy were due to having no children; were due to knowledge that my mother and other members of my family had BAD symptoms during their menopause; were due to a sense of feeling that I still wanted the option (no matter how tiny) of maybe having kids; were due to the fact that I was only in my early 30s when it was first suggested; were due to the fact that when it was first suggested I did not even have a clear diagnosis or explanation of my symptoms; were due to the fact that I hadn't even had a chance at IVF; were due to a feeling that I wanted to try to control my symptoms through less drastic measures, and if these did not work, then I would eventually consider hysterectomy.
I am sure that many women may feel the same. I am SORRY for the long reply - this is something close to my heart. It is also something that I (like "Impatient") could discuss passionately, and at length). I believe FIRMLY in patients having RIGHTS and CHOICES. Whatever treatment we have SHOULD BE OUR CHOICE.
Thanks again for an excellent article.
E. x
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