Is having a hysterectomy the best option at 45 ?

[dgallagher]

Was diagnosed almost 10 years ago managed for years on pain killers including morphine and various others which caused digestive problems had mirena coil, hormone injections which didn't agree with me, had laser treatment in 2009 which seemed to cure it now its back worse than ever and wondering what to do next. Any ideas ?

[Juleyanne]

I know the crossroads your at as I am there too! I am in my early fifties and had my last op in 2007 for endo and adhesions. One Gp at my local practice advises not to risk further adhesions by major surgery, another I see suggests going initially once to a private endo adhesion specialist to see what he says then have the op on the NHS hopefully with him! There is no way I could afford to go private but maybe a one off £200 would be worth investing in my future health and options. I am between a rock and a hard place, it is always a big gamble having more surgery if the previous ones did not work long term due to adhesion formation. I always think if your endo or adhesions have glued up organs before, they probably will again. Some people make adhesions more than others apparently and I am one! There are cases where those having hysterectomies say they did the trick. If you do go for it, make sure you have a surgeon that specializes in complicated endo and adhesions. Not all gyne's are specialized in this field.

[InsideOut]

I agree with Juleyanne. If this is what you decide to do you need to be sure that the surgeon is expert at endo. The hysterectomy will be no good if lots of endo is still left around the abdominal cavity. I am in a similar boat and a little older than you. I've decided to defer my decision for a while. Maybe I can make it through to menopause. We'll have to see!

[daffodil]

Hi,I am in the very same situation as you both! I have been very successfully treated for my endo and adhesions for 5 years - synarel,

then decapeptyl,then depo provera,but now my bone density is lowered and my gynaecologist saying they will not treat me longer term with the progesterone due to this and my only option is total pelvic clearance.

As I have had numerous surgeries to ablate and cut,as well as appendectomy,2 caesarean sections all with very bad complication,.I am very reluctant to have surgery.As Juleyann says any surgery will create more adhesions.

Unless the endo is confined to the womb and they can guarantee to get it all out,then what happens is they put you on HRT after surgery, which feeds the deposits still attached elsewhere

.In my case,I am glued together inside.I also have adenomyosis ,so hysterectomy would help this part,

So in desperation I am consulting a medicinal herbalist and am radically altering my diet have been gluten and dairy free 10yrs, gone organic as much as can afford.Meat and chicken are particularly bad as they are fed a cocktail of hormones and antibiotics.I now have organic meat and chicken and though it is twice the price,we eat half the quantity now.Another thing that is bad is soya and this has been my alternative to dairy,so this I am going to cut out.There are lots of great books and websites on the natural treatment of endometriosis -they get to the root cause,Herbalist will look at the whole body and try to sort out the root problem which she says is toxicity and poor elimination,causing inflammation.She is giving me a tincture containing herbs for pelvic clearance,liver function as well as an enzyme called serapeptase.Do look this up if interested - it breaks down fibrous tissue and seem to be rather a wonder drug,though totally unacknowledged by NHS.Interesting that in Japan and Europe is is used widely after operations.I am at the stage I will try anything to avoid any more surgery( I am 48yrs).I also take physillium husk,vitamin C powder and spirulina every morning,mixed into a fruit smoothie.This has greatly helped my Ibs and tendency to get bunged up when the pain is severe.I would recommend the physillium husk -cheapest place to get is on amazon.

I am in early days yet as I have only been taking the herbs and serapeptase for a week.sowill keep you posted if interested.

One thing I have noticed with endo is that the treatments make you feel you have lost control of your body.The body is remarkable and has thea bility to self heal,given the correct nutrients are being given.I am hoping an dpraying that this gentler approach will prevent the need for surgery.In the end we are all in different circumstances,so it has to be an individual ,but well informed choice.

Do let us know how things going -it is good to find this forum -I have just joined.

[endodoll]

Hi there, I had years of endo, cysts, fibroids and adhesions (had 3 c-sections) With my first lap my surgeon said I was a mess and suggested a hysterectomy. I wanted to try all other options first, which I did, mirena, decapeptyl etc. I researched a lot over this time and made sure to ask LOTS of questions of my GP and consultant. I decided to take full control of my situation, after all the docs would go on with their day after seeing me and would move on to the next patient, but I was the one who would have to continue in pain. So after a few months of research, questioning and thinking I was the one who went to my doc and then my consultant, and I was the one who suggested having both my ovaries removed (leaving everything else) since the ovaries produce most of our estrogen. I know the negatives of having this done but in my case anyway I felt the positives outweighed the negatives, the endo had also spread to my spine so where was going to be next? So on the day before my 47th birthday, 7 weeks ago I had both ovaries removed. I know it's still early days but so far I have not had endo pain because of course I don't have the dreadful ovulation and period pain anymore. Sweats were bad for the first few weeks but have actually almost gone now. My scan a couple of weeks ago showed that my fibroids are shrinking so I have a little pain from that but that will go in time.Because I discussed things so much with my doc, he very intelligently put me on a low dose antidepressant a few months before surgery and I'm still on them so I've had great mood during all this.He also put me on calcium now and has ordered a bone scan so we can keep track of that. So to sum this all up, I'd say research, speak to all docs involved in your care, don't allow them to rush you. Always use the word 'we' to show you are as much involved about your body as they are. Most important, always bring your partner or someone with you to your appointments to show you have others supporting and fighting for you and to be a witness for what was said,(this will make them very careful about what way they treat you) I hate to say it but preferably a well informed male, all my docs remarked on the great husband I had!! So far this treatment seems to have worked so far for me,time will tell but I have more energy than in years and no pain (apart from fibroid shrinkage). Best of luck to you and I'm here if you have any questions.

[Dylanfred]

yes yes yes yes yes !!! having tried all of the above treatments & suffered all the usual symptoms of endo for 15 years - 3 months ago I had a vaginal hysterectomy. It has been the best thing I could have done, I am 43 & truly wish I had done it sooner. Apart from 2wks following the operation when I felt uncomfortable, I have done as I am told and feel like a new woman. I am blessed with 1 son Dylan who is 9 now, who we struggled to get due to endo and I feel I can now look forward positively to the future. Good luck with whatever you decide, honestly I am so happy it was the best decision for me.

[mrschuckles]

Hello I saw Mr Trehan yestereday who is the leading specialist in Endo I had a TAH 22nd Oct last year including ovaries cervix etc. Mr Trehan is horrified that my ovaries have been taken as "these are the most important organs a woman possesses". I had my hysterectomy to 'cure' my severe rectal/vaginal endo - but it hasnt made any difference. Mr trehan is going to remove the endo by excision which is the ONLY way to cure endo. Removing your reproductive organs isnt a cure. hope you get sorted x

[piper7 in reply to mrschuckles]

i`m an endo sufferer, I have an inquisitive medical mind and being a physio some training. Due to this I came across Mr trehan online by knowing what to look for. I`m in the process of getting my surgery to cover the op with mr trehan, your message is what women need to know!! REMOVING OUR ORGANS DOES NOT CURE ENDO AND CAUSES MORE ISSUES. a woman who is older maybe a hysterectomy is ok for them, but when you haven't even started your family yet and wish to live a pain and fatigue free life the nhs is POOR when it comes to endo. I hope women listen to this

[dgallagher]

Thank you for all the advice and information I think I've made up my mind not to have the hysterectomy. Can you tell me where Mr trehan practices please.

[Impatient]

Mr Trehan is at Elland Hospital near Halifax, he is listed on the BSGE website

bsge.org.uk/ec-BSGE-accredi...