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Post by sharonf on Feb 29, 2012 0:01:11 GMT -5
hi everyone my name is sharon, i have had endo for about 10 years now...i have a 6 yr old son... my pain started in april last year after my 7th laparoscopy for the endo....it was about every 6-8 months i was getting the endo removed...after my op in april i was suffering from severe pain everydayi went back to see the doc who preformed the op twice after the second visit thought i better get a second opinion as he seemed to brush my pain aside...mind u i ended up in the ER 3 times...but i was over reacting...anyway went to an endo specialist who has since done another laparoscopy in dec 2011..i had a mirena put in and had biopisies taken off both ovaries plus endo removed from bladder wall, ovaries, and palvis aswell...the doc has since also put me on the pill microgynon 50 so im on 2 types of contraception to stop bleeding for my endo as pain is bad when i bleed...plus im on a tablet called anazstrozole also for endo..well guess what i have started bleeding again...and pain has returned quiet bad....when i went to see him for my check up after the op....he said for me to be pain free totally i need to have a hysterectomy....i was in so much pain on monday i rang the specialist and he suggests i go to my local gp to get some pain relief i have re booked into see the specialist on the 19th march....but when i talked to hm he was like i told u at the last app that hysterectomy is the only way to be pain free.... doi go and get another opinion? as this is my second one...im so over being in pain all the time...i thought this doc was really going to help as he specialises in this...but nope doesnt look like it....im not sur eif im ready to have a hysterectomy yet as im only 34...i have a partnerand he has 2 children from previous marriage....just not sure what to do....any advice would be greatly appreciated.....
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Post by angelicky on Feb 29, 2012 2:23:46 GMT -5
yes, please get another opinion. A lot of the time a hysterectomy wont work for endo, as the implants can be anywhere within the abdomen (and a few other places besides), they are mostly triggered by oestrogen and they even appear to produce there own oetrogens (according to some books i've read). So even with a total hysterectomy and not going on Hormone Replacement Therapy you may still have pain, plus without the oestrogen you run the risk of problems like lower bone density
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Post by hellsbells on Feb 29, 2012 6:00:23 GMT -5
Removing the uterus will not cure endo pain honey, only any pain associated with the uterus. Adenomyosis can be a cuplrit, or other reasons. But so long as you have ovaries, with oestrogen feeding the endo, the endo can and does survive. Think long and hard, and seek lots of advice! Dietary changes can be an enormous help in controlling pain and other symptoms, please check out our diet/exercise board!
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Post by Karen on Feb 29, 2012 6:33:31 GMT -5
Please get another opinion!
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Post by JC on Feb 29, 2012 7:11:34 GMT -5
A hysterectomy is an extremely personal choice. We can tell you our own experiences and hopefully guide you to the right decision, but ultimately it's your decision. A hysterectomy is NOT a guarantee to be pain free. It does not cure endometriosis and any doctor that makes that promise is not being very realistic. A hysterectomy can make you pain free, and it has for a lot of women and for the most part they are very happy with their decision. But for some women, it does not bring the promised pain relief and so then they find themselves not only still in pain, but no longer able to have children indefinitely. You also have to take into consideration the side effects of being surgically induced into menopause. It's an extremely tough choice. Do you take the chance with the hope that it will work? I totally understand when women want to opt for the hysterectomy. I really do. If it works to alleviate all of your pain then it's absolutely worth it. You should just understand that it may not work. There is a website www.hystersisters.com/ that is really awesome for women to share stories together about their experiences with a hysterectomy. You can learn all about the side effects of "surgical menopause" and you probably get a lot more stories about whether this was a successful treatment for endometriosis or not. We have a few hysterectomy stories here that you can read through. Some are good, some are not. I would just strongly encourage you to do as much research as possible before making a big decision like this.
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Post by sharonf on Feb 29, 2012 22:55:14 GMT -5
thank u ladies for your replies
i was told by the doc that did my last laparoscopy that my pelvis and pelvic wall is very inflammed and that they arent sure what its from or wven how to fix it...so wondering if the pain i have each day is from that? the doc has said that my endo is quiet advanced too... i have lost about 32 kilos in the last 13 months too....i eat like normal...i have had tests done about this and i have hig blood pressure too so have had tests done all over the place they are putting it down to stress? can i sk my doc to suggest another doc to see to get a 3rd opinion really...i dont want to make a hasty decision like this either...i will do all my research and stuff before making the decision...just the pains getting unbareable now....i hate wakingup everyday and nothing changes....i thought that this specialist was going to help me but nothing has changed...sometimes it gets very depressing....
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Post by Karen on Mar 1, 2012 6:39:44 GMT -5
Have you been tested for Celiac or have you tried modifying your diet? Your weight loss makes me think you may have food sensitivities. A lot of us find we.can get significant pain relief and reduced inflammation from eliminating certain foods. Dairy, Gluten, and sugar seem to be the top offenders. Diet changes can be a bit tricky at first, but can have a bit impact!
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Post by sharonf on Mar 8, 2012 22:41:58 GMT -5
i have been tested for lots of things....have modified my diet too...i did the endo diet for about 3 months and pain still there... i went to my loccal doctor yesterday to get some help with pain relief...i was showing her where the pain is on my pelvic area and she said its your ovaries...i get a shooting pain going up and down my legs...she said that if i decide on the hyterectomy that thye will most likely remove my ovaries too...she is gynocologist too...but as for pain relief she has told me to take the lyrica 2 times a day and if the pain gets to much go to the hospital and get admitted so they can give me morphine to help...as im allegic to endone there isnt much they an give me apparently.... imat a loss atm...i cant seem to win...im angry that i have to go through all this again....ithought after the last lap that it would be better....i am seeing a endo specialist who is supposed to know what he is doing and he is well respected in the endometriosis specialists here in mlbourne australia....im just so over it all....i want to wake up and haveno pain..i want to go to sleep adn have no pain...i want to go to work nd be able to play with my son buti cant because the pain is unbareable...im grumpy all the time....i bite everyones heads off....imlike a walking time bomb waiting to go off...does anyone else feel like this or ami the only one.......
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Post by angelicky on Mar 9, 2012 0:56:37 GMT -5
I feel much the same too, although i have found that my moods are much better without wheat. Good luck with the specialist
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Post by sharonf on Mar 13, 2012 23:48:21 GMT -5
i tried the endo diet for about 3 months....found that it wasnt working... i have my appointment on monday with the specialist....pretty much deciding whether or not to have a hyster...i rang around and told my story to a few endo specialist clinics here in melbourne australia...and waiting list is 2-3 months...just crazy...i have decided to stay with this specialist as i cant handle the pain anymore...and the being in pain until i see someone else...all i want is to be pain free be able to play with my son outside and do things with him... its so hard to be in this situation...im 34 and deciding whether to have a hysterectomy...my mum was 36 when she had hers....everyone wants me to wait....but im just not sure.....im also very concerned i have been reading the hysterectomies part of this board and alot of women are saying there endo has come back after years or just months after a hyster...im rell scared....im not takign this decsion lightly.....i know my partner doesnt want anymore kids...he has 2 froma previous marriage...and i have my son which is a blessing considering i have endo plus pcos and high blood pressure....just want to make sure im doing the right thing.....
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Post by Karen on Mar 14, 2012 6:13:58 GMT -5
Please check out the website hyster-sisters. They may have some additional advice and support as they have a larger population of women that have had or are considering a hyster. It's a big decision and there are many things to consider. Please, whatever you do, make a decision based on facts rather than fear!
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Post by sharonf on Mar 14, 2012 18:28:41 GMT -5
i joined that website yesterday also....there are so many things to take into condsideration and believe me im not making it lightly....its very scary being told a hyster is the way to be pain free....i have taken alot of things into condsideration and i will be having a very long discussion with my specialist on monday when i see him....he has got lots of questions to answer before i gve him an answer....
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Post by semicolon on Mar 14, 2012 18:55:40 GMT -5
If you do decide on the hyst, I would do it with an endo specialist who can remove any endo at the same time. But I'm not sure the doc who did your last lap is the right choice. Did he look for endo on your pelvic walls and ligaments? The shooting pain down the legs can be referred from those areas.
It sounds like you are the end of your rope, but still trying to make an informed decision. Hang in there!
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Post by sharonf on Mar 14, 2012 22:14:33 GMT -5
the specialist was the one who did my last lap...and according to him it was quiet messy in there....they removed endo off both ovaries, my pelvic wall, my uterus it was abit nasty inside... but the doc who did them previously has wrecked my insides....he was just a gyno not a endo specialist..... and yes im at the end of my rope...really pulling my hair out...but i wont make this decision lightly as its a hard one to make...and ill get as much info as i can and ask alot of questions before i make my decsion....its just so frustrating not knowing if it will really help if that makes sense....i have tired everything they have asked of me....there are a few things i cant do because of allergies and having high blood pressure some of the meds interfere with my bp...but i have tried all other avenues.....so really doing my research on this
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Post by sharonf on Mar 22, 2012 18:43:36 GMT -5
hi ladies
i thought id give u an update of whats happened lately.... i had my endo specialist appointment on monday and after a long tiring process i have decided to go ahead and have a hysterectomy....it will be done within the next 3 months...its been a hard decsion to make but one that i think is the best and hasnt been made lightly....i will be the mum i want to be to my son and hopefully not be in pain anymore....my partner and family are very supportive on this...i will need them for help while im recovering
thanks you for all your kind words in regards to this too....its been muchly appreciated
thank sharon xx
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