Hysterectomy

[Katedi]

I was diagnosed with endo Nov 2011 and I've been on several different BC pills since then. In October of 2014 I started rounds of Lupron Depot, which wasn't all bad. I started experiencing some awful oiliness to my hair and face at the 4th month though -- hoping this goes away over the next few months. I'm now going to start Lo-Seasonique (non generic) as of tomorrow.  

Here's the thing: I DON'T WANT KIDS - EVER.  I expressed this to my doctor and he was willing to do a total hysterectomy on me, but he wants me to give the Seasonique a go before we proceed.  He would do a full hysterectomy on me because of the endo, but my concern is that I simply do not want to age fast. I don't want to go through menopause and I heard sex gets weird after a hysterectomy.

I don't want to be reliant on BC forever. It's annoying and I don't know that I'll always be able to afford it, if god forbid I lose my job or some crazy law is passed.

Can anyone offer some ideas to present to him? Tubal ligation won't help my endometriosis, it'll help the no babies bit. But I need to knock out two birds with one stone. =)

[ipurr2]

Hi Try not to be too scared! I would recommend you go here for accurate information on the disease.
http://endopaedia.info/
I would also recommend you see an endometriosis excision specialist because that is the only dr. trained to remove the disease, preserve your organs and allow you to get on with your life!
The good news is because it was found young you have a better chance at the disease being fully eradicated in the hands of a specialist! So make sure you do whatever it takes to see the best of the best so this disease does not take years of your life!

[misslovely97]

Hi!
I just got diagnosed with endometriosis, and i'm really scared. I'm actually still in high school!!!!

Could you please share with me those websites with "actual and factual information" ?

My email is ***@****

[ipurr2]

I would have to question if your dr. is truly an endometriosis specialist as they almost always can excise the disease and leave the organs...I had my hysterectomy with ovaries removed 11 years ago for endometriosis..the endo was not excised as it was not a specialist so my endo continued and it then took me 7 yrs to find a true specialist who believed it could be endo after having all my female parts removed...he went in and sure enough frozen pelvis again...I also thanks to having my organs removed deal with pelvic organ prolapse...sex is very different...before hysterectomy/bso I had uterine contractions with my orgasms well I didn't even realize this until I could not get them...it took years before the nerves that were severed healed enough for me to be able to reach baby orgasms some of the time...but it's more work then it's usually worth...My tissues are atrophied if I don't rub estrogen cream down there and even doing that the tissues are different...Let's see what else...I know have had pelvic organ prolapse (entrocele, rectocele, cystocele, rectal intussusception, vaginal vault prolapse) when I had all that repaired by a urogyn who also is an endo specialist she found more endo and removed half my colon, pulled all my organs up with mesh because I had gotten to a point I went 6 yrs unable to have a natural bm...only through enemas and colon hydrotherapy...so 6.5 hours of surgery and I was good for 11 months before the pelvic floor dysfunction and weakness of my pelvis allowed another rectocele to form and so I had that repaired with sutures only from my vagina...now my vagina is more angry then before, my urethra is painful do to pfd which is spasms in the pelvic floor muscles...I had a neurostimulator put in to try to help calm my nerves to let my muscles relax as well as use vaginal valium and though it has helped some I now am having nerve issues going down my legs and my 2nd rectocele is back as well as a cystocele...I see my dr. on Wed to see how we will move forward and I will most likely need botox in my pelvic floor muscles again and if it doesn't work I will most likely need to have more surgery and then continue botox every 3-6 months for who knows how long...my insurance may or may not cover it....I also have to pay for my hormone replacement therapy which my body gave me for free...my skin is drier, I am exhausted and have brain fog...I feel like I am 90 and I am 48 years old...so I would think long and hard on the decision to have your organs removed...granted all stories are not as rough as mine and Ticked...but you just don't know which road you will find yourself on and the journey has been long and hard...I knew for sure things would get better...and somethings have since excision surgery, but so much damage has happened from the endo and the hysterectomy there is not going back...also my adrenals are barely working and my thyriod is now hypo so I have to take meds for that as well...so yep...this disease is a life changer but so is a hysterectomy...I had 4 surgeries in 2014...a 6.5 hour one in 2012 and am most likely not done yet...so if you end up where I am ... trust me b/c pills are MUCH cheaper....I still live a nice life but will always wonder how things would have been had I not had the hysterectomy to "cure" my endo..which it did not...I would recommend seeing a true endo specialist their are not many...and have my disease excised and tubes tied...not a hysterectomy...I ended up trading in period pads and tampons for poise pads instead...so the potential pay off is just not worth the risk in my opinion!  Hope this helps and good luck on your decision!

[ticked]

Medhelp doesn't have the resources for this information as its more of a question answer type forum. It is also volunteer based for the most part. I can give you some links to some good sites but they are not allowed to be posted here and if you have twitter or Facebook I know some top sites for actual and factual information that are active 24 hours a day.

[Katedi]

It is and that's why I'm trying to hear from people who have gone through it so I can make the best decision about what to leave and what to take.  

Medhelp doesn't appear to be very active or abundant with information, unfortunately.

[ticked]

It is a huge decision. I am a year post op and its been a hell of a ride.

[Katedi]

He is an endo specialist and told me that my ovaries would have to be removed.  He's willing to do it only because I don't want to get pregnant and I don't want to rely on BC for my whole life.

[ticked]

Have you been told that a hysterectomy does not cure endo?

I am curious of your age and the fact that your gyno is okay with doing a hyster on you.

I am 38 yrs old and I am a year post op Endo. Ageing isn't even close to what you go through there is a lot more to it.

I think you need to see an endo specialist because it doesn't sound like that is what you are seeing. Let me know and I can find one that could help you.