Words of advice to the monster inside of you

[Owen31140]

Hi all.

I'm 27 and have suffered with endo for the last 13 years.

4 weeks ago I decided to have a total hysterectomy removing my ovaries too.

2 reasons for this:

It was destroying mine and my families lives

It was stopping me from pursuing my career in the police.

Having this operation was a big decision. The endo may not be there any more but there is still a long road to go.

My point of this post is this:

Go and look in the mirror.

Tell yourself that you will not be defeated by endo.

Tell yourself that everyday that you live is a day closer to defeating this debilitating disease.

Tell yourself that whatever your dream, you will achieve it.

Tell yourself that you are better than the monster inside of you, because belive me... you are!!

If you want something bad enough you will get it and you will never stop fighting until you do.

I wish every single one of you the very best in life, in you ambitions, in your dreams, but most importantly in your health.

[abstruze]

You are really brave! And I am really happy that you were able to take this big decision and I hope that it brings you relief.

I have stage 4 endo and every day is difficult. Sometimes, I feel the most difficult part is talking about my struggle.

[Owen31140 in reply to abstruze]

It's not always easy to talk I very rarely talk to people about it. I have a book that I write in on both good and bad days. Every now and again I sit and read it. I find it helps. If you struggle to talk about it, that may be an idea X

[Live_Life2dMax]

you have just made me smile a first in a very long time. i am 29 and am too 4 weeks post hysterectomy, removal of one ovary, the second to be removed in a year or two. so many people have judged me on my decision but to me that op was the begining of my life. i feel no loss, no regret, i know its no cure but to give me a year without needing an operation, to give me a month without dredding that awful mother nature, to give me a day where i feel no pain gives me a future. i have been blessed with a beautiful daughter who is 13 now who has seen her mum in states a child should not see, even phoned 999 on one occassion. i have seen a difference in her too as she knows now i am on the road to a better life. endo takes so much from our lives and we should not be scared to fight it and improve our lives. xxx

[givemeananswer]

Owen31140,

I hope you are doing much better. it's dredful what this disease puts us through and takes from us. However, and I feel bad for having to say this, but hysterectomy and bilateral salpingo oophorectomy does not cure endo. Your problem could very well have been adenomyosis which is found within the uterus but endo is not. Also if you were one to suffer fom ovarian cysts or endometriomas of the ovaries or polysistic ovary syndrome you may benefit from having your ovaries removed but it will not cure endo either. I personally have had a hysterectomy die to adenomyosis and I had just lost my right ovary at the beginning of the year due to endometriosis. Another falicy exists that menopause will bring endo into dormancy. This is not always the case. Although a large population will have less incidence for some it will continue to be a nuisance. the gold standard of treatment for achieving success with addressing endometriosis is having excision surgery to remove all lesions of endo.

Did you obtain your operative and pathology reports post op? I suggest you do. It has been my experience and so many othersI;ve talked to that the surgeons don't tell us everything that is on these reports. Also did you get photo's from your surgery? It is a good idea to keep these records. You may also opt to have someone annotate them to see if any disease was missed. Hopefully your issues are all addressed and the surgeon excised the endo at the same time of the operation. I feel it necesary for those who might be reading this to be informed that hysterectomy is not a cure for endo neither is removal of the ovaries. Thank you for your service BTW. Best wishes.

givemeananswer

[Nicky-G]

My situation is similar regarding career and family. I have decided to hold on to my uterus as long as possible, nevertheless your words are truly inspirational, and I hope that you find peace and happiness in choosing what you want to fight for!

Best of luck In your battle x

[JennieJo]

I think your words are wonderful and wish you luck. However I just want to point out, as per a previous reply, that the op might not remove all your problems. As someone who had a hysterectomy and ovaries removed (at age 43) I can say that I still have some problems with pain, nothing like as bad as before of course but they are very familiar pains so suspect they are endo related. On the positive side the hysterectomy was great and although it is a big decision to lose your womb (much easier for me as I was older) the consequences of no more painful heavy periods was absolutely wonderful. However losing ovaries I found a much bigger deal - it can affect your mood and sex drive as you lose all those hormones, including a lot of testosterone. Though I'm sure that doesn't necessarily happen to everyone, I am just starting to feel a bit better on that front, seven years later. I have to say I really resent having lost my ovaries (though according the the surgeon he could not save them) and if I were you I would try to keep at least one for the time being and see how you get on. If you do have ovaries removed you will need HRT to stop heart problems and osteoperosis and it may take a while to find the right one for you. Also if you suffer lack of sex drive and general zest for life get the consultant/GP to check your testosterone levels. You can have testosterone gel prescribed. Hope I haven't brought too much reality into the decision and you may have heart all this before, but I'm sure you need to know all potential outcomes before you go ahead. Good luck x