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Post by omaklackey on Aug 17, 2014 21:31:02 GMT -5
Have you had any luck finding a real specialist... even if it means travelling. It made all the difference in being treated well, and seriously. We got five and half hours to talk to see mine. Also I had some luck with fascial release until I ran out of money. It was very helpful! You can ask around to your local physical therapist about who to go to. Sounds like your endo is like mine and in some rough locations, which means that the hyster only relieved the monthly bleeding (which wasn't really an issue since I had already had an ablation).
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Post by chibineko717 on Aug 18, 2014 19:38:16 GMT -5
Maybe a pre-sacral neurectomy would help? They would cut the nerve to the uterus. I am a little past 8 months since my hyst. I'm still having pain since apparently my colon is not working properly. I'm not sure it has helped with the pain, but it makes it easier to rule out my other pains.
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Post by vweiss824 on Aug 21, 2014 20:22:23 GMT -5
Is there a site where you can find endo specialists in your area? I also saw that the Endometriosis Research Center www.endocenter.org is located in Delray Beach, Fl, which is about an hour or so away from Orlando. I don't know if they are a group I should reach out to and see if a hysterectomy would help. I'm just at my breaking point. Nothing is working, my pain has been out of control 24/7 and it's nearly September and I haven't worked since February. I'm just so desperate to be able to have a normal life, and i have resigned myself to thinking a hysterectomy might be the best option.
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Post by vweiss824 on Oct 6, 2014 2:05:08 GMT -5
I have FINALLY been approved for a hysterectomy scheduled on 10/14. Honestly, I almost cried when the doctor said he would do it. I hoped he would but I haven't had much luck and my hope was running out. Most people don't understand why I am so elated about this, it's because I've been begging for years I was tired of surgeries and basically being a lab rat. As I was leaving the Doctors office I was in pain but I couldn't believe how happy I was. A woman leaving with me was crying from pain in the elevator and explained she will be having her ninth laparoscopy. That just cemented my decision in knowing this is the right choice. That was what i was afraid would end up happening to me. What do I need to prepare for most after the hysterectomy??
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Post by chibineko717 on Oct 6, 2014 22:26:06 GMT -5
I'm glad the doctor listened to you. I think that you need to make sure you take it easy and don't lift things. Take a look at the laprascopy advice thread and the recovery thread that are pinned in this surgical treatment section. Good luck!
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Post by omaklackey on Oct 10, 2014 13:18:59 GMT -5
my biggest advice: no matter how much you think you are ready for a hyster. YOU ARE NOT. Go to Hyster Sisters for lots of great information about some of the things you can look forward to. I was 33 when I had mine and I was done having kids, and yet I still have dreams where I wake up thinking I'm pregnant and its horrible. These days so many women are waiting until they are older so a lot of my same age friends have toddlers and newborns. It messes with your head no matter how ready you think you are. It also really messes with how you view yourself, especially if you are having ovaries removed. I have tried to explain this before but people don't understand until after. Yes I'm still a woman, but its certainly harder to feel sexy when your boobs drag across the floor because they have gone complelty flabby, when your sex drive becomes non existent, and sex continues to be painful for years afterwards (six week healing... not so much, just be warned it takes longer than that before it becomes comfortable again), and I have to shave my face more often than my husband. So ask for anti-depressent for those first six months, unless you are already on something, because its been a really hard thing overall. I'm now five years out from my Hysterectomy. I have had three more surgeries, two with a specialist for Endometriosis. I'm working my way towards number four but I'm stubbornly refusing to go to the doctor because I only just got started as an RN. Get ready for the arguments with the doctors afterwards who tells you "it can't be endometriosis because you had a hysterectomy", and trying to explain to the friends and family that "yes I had a hysteretomy, no it didn't go away because of that" for the hundredth time. As for immediate recovery... 1. bring lots of tissues as emotions are a mess for quite a while afterwards even if you leave the ovaries they often shut down for a while due to a lack of blood supply. 2. bring light comfortable clothes, nothing very warm because those hot flashes are a b*tch 3. buy an insulated water bottle for you night stand. The best cure for hot flashes is ice water on the inside. It will cool you off 4. buy yourself something sexy for afterwards to celebrate because lets face it; for us endo gals its a huge step and even though a Hyster has its problems getting rid of the wretched thing has its values. I know what its like to reach the breaking point and have to choose to try something, anything! Not having those monthly visitors is certainly worth a lot of pain, depression and frustration that is life with endometriosis after a hysterectomy. I just want you to be as warned as possible. I kind of kept hoping I would be one of the lucky ones but I have stage IV so that was not a reasonable expectation. If you have any other questions about some of the emotional stuff, sex, etc. please feel free to PM me! Also be prepared to find yourself not wanting to hang with the ladies your own age for a little while. I found hanging around my mom's age friends helped a ton to get my mind wrapped around everything. Now even though I'm the same age as a lot of my friends, I'm looking back from a different age perspective because of the menopause.
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TMM03
New Member
Posts: 32
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Post by TMM03 on Nov 6, 2014 0:46:52 GMT -5
Don't have the date yet but mine is in the process of being scheduled, probably Dec. Just uterus and fallopian tubes. Get to keep cervix and ovaries. The estrogen contributes to my breast cysts though, so they are artificially plumped until menopause kicks in. I have to wonder how much I'll notice it kick in, since I won't have periods that taper off.
My solution is for adenomyosis though, not cancer. I realize this isn't an outcome some people would consider good, but in my case it's either this or live in pain indefinitely.
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