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Post by willow82 on Jun 16, 2013 23:22:56 GMT -5
I had a laproscopy for Endometriosis and had Stage III Endo excised from the rectovaginal space on the left and right sides (right was WAY worse and very deep), on the back of my uterus, and my uterine ligaments.
I started BC after surgery the first pill caused breakthrough bleeding and led to severe bloating, constipation, lower back pain, and leg pain. After I switched pills the bleeding stopped, but I didn't get any better.
Then I went on Lupron, after I got through the flare and started add back my pain dropped by over 50%.
My gatrointestinal issues did not resolve, due to many reasons I got a new doc. Started seeing an endo specialists at one of the best medical centers in the country. She sent me to pelvic physical therapy in the same hospital. I also had a contrast MRI to determine that my deep endo lesions were at least mostly removed, and no deep lesions were missed, I was clear.
Physical therapy found and resolved adhesions from my incision sites. The other big thing was resolving adhesions fusing my rectal wall to my vaginal wall. My right vaginal wall remains "ridged" it is quite likely that my right vaginal wall has somehow collapsed.
Once we got through working on the adhesions in the rectal vaginal space my constipation resolved. However, my bowels are still inconsistent. One day they will be rocky and hard, the next barely formed. Some days I barely go at all, and some days I go several days worth over the course of a few hours. This is accompanied with bloating, and periods of very bad gas. After going #2 I am usually nearly paralyzed with pain, and have a horrible tugging feeling, and terrible nausea.
I never had gatrointestinal issues before my period/endo got really bad.
The current theories include that my intestine on my right side has dropped, along with my vaginal wall, potentially a torn or damage ligament. Something along the lines of megacolon, or damage to the smooth muscle layers of my intestine. It is assumed that any gastro issues I have are caused my trauma from endo.
I have an appointment w/ my endo specialist on Wednesday, this is my last month on Lupron and we need to figure out what we're doing. I am terrified since no BC options have EVER helped, if anything they've made things worse.
I go to the motility clinic in July to start the process of figuring out what is wrong with my colon. A lot of the potential issues may mean surgery.
At this point I am seriously considering a hysterectomy, and maybe leaving one ovary. It's not a cure, but at least maybe could slow things down. I am even considering getting my ovaries out too.
This may sound drastic, but added to all my other issues I scar HORRIBLY from surgery. Interceed was used during my surgery and I still had severe adhesions from surgery. My PT said it's just my genetics. However, this means I need to avoid surgery as much as possible. I want my next to be my last.
I am at such a loss at this point.
I am also so terrified about next month, things are bad now, but before Lupron they were a living breathing horrific nightmare.
It's hard to think about it and not cry.
Ideas? Support? Been through something similar?
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Post by hellsbells on Jun 17, 2013 15:24:15 GMT -5
I have horrible bowels. I feel your pain.
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Post by nibletz on Jun 19, 2013 8:22:37 GMT -5
Hugs willow I have issues with bowel n sometimes its so painfuk I cant get up from toulet and am there for an hour crying n hubby has to help me....my bowel is stuck to my left ovary and twisted
I get the emotional side too I cant even talk about it with out tearing up so I know its ha4d to to deal with xxx
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Post by willow82 on Jun 19, 2013 21:17:08 GMT -5
I saw my PT and gyne today. My PT thinks it's a solid theory that I have adhesions pulling on my colon. My gyne thinks it could be, but won't (and likely as an MD ethically can't) state an opinion on it until I go through the wringer with the Motility clinic. My pelvic floor is much improved (which I already knew!) but my bowel issues are a mystery. My gyne was borderline booking a lap date for August, though since nothing is clear on the physical exam thinks it's wiser to wait until the Motility clinic fully weighs in.
My gut (har har!) says this is adhesions, it feels the same as when the Endo got REALLY bad, and it wasn't a problem I had beforehand. I know I have to truck through all these tests to be sure (or maybe surprised!) though it's disheartening having no diagnosis or end in sight.
It kills me that Endo and Adhesions so often have to be diagnoses of exclusion since the only way to know for sure is surgery.
In my case we need to know that adhesions are the issue since I have such horrid surgical scarring, if it's the wrong dx surgery would do more harm than good.
My gyne is in agreement though with doing a hysterectomy the next time I need surgery. My uterus loves growing endo and sticking to things, and my periods shake my whole pelvis. I've already had one fibroid on top of that, and who knows potentially adneo.
I just don't know how long I can hold out being violently ill after every time I go to the bathroom.
PT also thinks based on where I am having pain, pulling sensations, etc, it likely is my colon where I have a history of adhesions.
Blah.
I want some semblance of my life back.
I don't want to run dry on sick time before I need to be out 6 weeks for surgery.
I agree with my team and they are all the right decisions, but they are arduous, and soul sucking.
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Post by hellsbells on Jun 22, 2013 12:11:52 GMT -5
How're you doing today?
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Post by willow82 on Jun 23, 2013 14:58:47 GMT -5
Thursday I had a complete mental breakdown. During morning meeting started crying and couldn't stop for over an hour. That continued on and off throughout the day.
I saw my Primary Care who has been my guardian angel through all of this. He thinks it is ridiculous to think it is anything other than adhesions. He is going to try an outreach to my gynecologist.
I agree that I need to be seen by GI just to rule anything else out, or even to rule in adhesions.
However, I can't let this go on forever.
It takes about 2 months to get into see my gynecologist, and about 2 months for surgery. So if I'm being optimistic when I get all my GI work done by sometime in August, that puts me under the knife in December. When if she would schedule with me now, I could be in by August/September.
3 months may not be much to her, but it is everything to me.
For the 6 week expected recovery of the hysterectomy, and removal of adhesions I need to use a month of my own time before rolling into temp disability. At this point I am so sick so often by December I'd be out of time.
I'm looking into other docs, and getting my pt and PCP to push my current gynecologist.
Friday I had diarrhea all morning, yesterday more rock hard stool, today more rock hard stool.
Nauseous almost all the time, and having a hard time getting down food.
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Post by willow82 on Jul 19, 2013 20:24:18 GMT -5
An update: Starting back on Levora was a complete disaster. My digestive tract completely shut down, I began to have constant pelvic pain including a stabbing pulling pain on my mid lower right (around where my uterus likes to glue to my colon). I am living on a 150% dose daily of Miralax, vegan ensure, and Vicodin. The Miralax got the constipation (which is suspected to be a partial intestinal blockage) by July 8th, but the pelvic pain continued to intensify. Nothing was working on the pain, I have been religious w/ my PT exercises, but they are now excruciating due to sharp pulling type pains, when I do my leg and lower back exercises.
My gynecologist at Hopkins took over a week to return my phone call about this, and couldn't fit me in until July 25th. She also continued to insist that my issues were GI. Even though my PCP and GI disagreed. Thankfully I had an appointment with Dr. Belizan scheduled.
Dr. Belizan is my new hero! He read all my records, said he did not think it was GI at all, that the pain signals from my uterus, plus potential new adhesions are likely causing my pain. He also suspects that I have adenomyosis. He said that for me estrogen was no good. He gave me two options start Visanne and give it a few months, or start Visanne and just go ahead and get another lap and get rid of my yicky uterus, scar tissue, and any visible endo.
He was ready to schedule my LSH for July 26th! I was thankful though told him I needed a few more weeks to get my life in order. So I have my LSH scheduled for August 14th, and my Visanne shipped out today and should be here in 2-3 weeks.
I am soooooo happy and relieved!!!!
I finally have a doc who knows his stuff, gets how my crazy body and my crazy endo deals with these crazy pills. I trust him with being able to hold the endo at bay with the right prescriptions, and being able to keep my ovaries. My only hesitation with having another surgery was whether or not I could trust a doc to deal with the endo w/out an oophorectomy. Which at age 31 I really did not want to do.
I will no longer have a uterus to stick to my colon, cause ridiculous pain, bleed everywhere, swell up and run into my lower back, no longer need to worry about more fibroids, uterine infections . . . .
I am hopeful for the first time in a long time.
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Post by nibletz on Jul 20, 2013 4:06:08 GMT -5
Aw2 babe im so happy for u hun...its great new doc is so on point n willing to help not just pass blame I hope all goes well keep me updated n always here for u hun xxxx
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Post by omaklackey on Jul 20, 2013 12:57:10 GMT -5
I would just add one thing. Make sure you know what your going to get from the hysterectomy. If its no bleeding/pain for those few days a month and that's totally worth it, that is great! But it won't fix everything. I'm still happy I got my hysterectomy but it causes a lot of other issues so I always try to make sure people have done their research. If you haven't done it check out Hyster Sisters. They have a ton of information on hysterecomies, what to expect and how to get ready for it! Please message me if you have any questions, I'm always willing to talk about the decision making etc. Good Luck!
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Post by willow82 on Jul 20, 2013 20:50:32 GMT -5
I am on hystersisters I joined in January when it first looked like I hyst was an option. My uterus loves to adhere to everything, and causes pain EVERY day, with no bleeding. I haven't bled a drop since after my first two weeks on Lupron in January. The hyst is also going to give me a better shot with progestin only options, which happen to be my only options If a hormone treatment can cause bleeding I BLEED. Also I have 4 docs saying it is a good idea. Even the last idiot I was seeing (she just didn't want to be the one to do it). My uterus is also so twisted, retroverted, and adhered to everything my right vaginal wall is collapsing. On top of all that I my body scars horribly on the inside. I need to do everything I can to minimize the need for future surgeries. Going ahead with a hyst is a long way to making this surgery my last. At the worst I'll need my ovaries out in 5-7 years. I appreciate the concern, but I am so happy and relieved with my decision. I've been considering it for the past 6 months. The reality is I will need a hysterectomy at some point between fibroids, endo, adhesions, and likely adneo. I'm glad I get to do it now and have real hope of getting my life back, and for the first time in my life getting a real shot to get ahead of this horrible disease. I'm really happy it's LSH, I really wanted to keep my cervix and have no vaginal scarring.
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Post by nibletz on Jul 22, 2013 5:56:33 GMT -5
Aww hugs hun I hope this helps n then no need for future surgeries n its good youve researched and got doc opinions xxxx
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Post by omaklackey on Jul 24, 2013 0:40:21 GMT -5
Yeah, I had the adenomysosis myself, and my evil uterus kept gluing itself to pretty much everything, now that the evil uterus is out of the way my bladder just glues itself to everything, and my bowels like to randomly have SBO's. My ovaries were also so damaged that I lost one at the first lap, and the second one four months later. You have to make the decision you think is right, I just always want to make sure woman know what they will and won't get with a hyster. I'm awfully glad not to deal with the monthly thing, and the ovaries blowing up (I had LOTS of cysts). But it didn't do a whole lot else for me because all the GI issues related to my Endometriosisi just keep coming back with the adhesions. I seem to make good adhesions. Doctor Mosbrucker callled me an adhesion factory. I'm sure I will have all kinds of lovely surprises for her in two weeks! Your surgery is just two days after mine! Mine is august 12th. We can share our miseries on the recovery blog. Good luck and I wish you all the best and NO adhesions! Oh and they may not tell you this but your ovaries might take a vacation anyways, even if they are left in there. The loss of blood supply when a hyster is performed can cause some interesting things. I'm sure it won't be anything your not used to considering the drugs you have tried. I would love some posts on your hyster experience for other woman on the Menopause threads. Maybe start your own? (I know technically you will still have ovaries so not truly menopause but still helpful for others looking into the hyster option.)
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Post by willow82 on Aug 12, 2013 9:07:26 GMT -5
I'm on my way to my pre-op with Dr. Belizan! It is so crazy to think that a week from now I will be in less pain then I am right now, and 5 days out from surgery. The past month only confirmed that this is the right decision. If the BC was going to help it would have been now and things have remained just as wretched as they were in the beginning of July. I actually cleaned the house on Friday, was in horrific pain the next day, and the pulling/stabbing pain in my lower right is as angry as ever. It almost seemed like it was going away, but no it was just because I was avoiding using that side of my body. My colon's still a mess, pain is a constant, and if I wasn't on Vicodin around the clock I don't even want to think about it. I've had pain peak at 9s and 10s even with narcotics.
Dr. Belizan is a lifesaver. If I was still with my other doctor chances are I'd be on disability right now with no end of this in sight.
Also, amazingly Dr Belizan is not a fan of Da Vinci, he still does all his lap work by "hand". It is amazing to have a doc with the precision and confidence to do that right and I'm looking forward to not being full of burns post op. Today he's doing a thorough exam and ultrasound to map everything out for Wednesday. Then I go over to the hospital for bloodwork, etc. 48 hours from now I will be under anesthesia with Dr. Belizan fixing my poor busted up pelvis!
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Post by nibletz on Aug 12, 2013 10:42:42 GMT -5
Good luck willow!!! I really hope this helps you stay positive and keep us updated xxx hope it all goes smoothly x
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Post by chibineko717 on Aug 12, 2013 13:08:11 GMT -5
Good luck! I hope everything goes well and you have a speedy recovery!
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