Ponstel for endo

[kkmaureen]

Hello. First time poster here, new to the community. I've had endo since '89, but it was kind enough to go into remission for 15 or so years. It's back. With a vengeance. I've been on Microgestin 1/20 since being hospitalized 3 different days this year because of the pain, vomiting, and the other awful symptoms associated with endo. I'm headed back to the doc Thursday of this week because my period came after pill pack #1 and I just started pack #4 and it hasn't stopped even for one day. Also, while the first 2 packs did alleviate the endo pain, #3 did not. I've been in severe pain for two days and my doc just put me on Ponstel today. Haven't picked it up yet from the pharmacy. Has anyone taken this?  Did it work?  Thanks so much!

[achilles2]

I took at look at those ingredients for Ponstel and I know I could never take it due to the fact I cannot have dairy or sulfates. This med in and of itself would give me one horrible migraine.

I do not know if these are your triggers and I hope you can take it. I thought I would just let you know.

achilles2

[achilles2]

Does an endo specialist treat your endo. A typical ob/gyn does not know enough. I can recommend two in your area.
Dr. Frank Tu
http://www.northshore.org/apps/findadoctor/doctor.aspx?docid=4329

And Dr. Miller (or Cholkari his partner):
http://www.surgery4women.com/

I hope this helps,
achilles2

[MonkeyGirl80]

Sorry you are in so much pain, but you are amongst those that truly understand. I had the same issue as you with the BCPs. I have endo and a cyst on each ovary. I was on Apri for five months to alleviate pain and to eliminate my cycles. The first pack and a half went well, then I had a non-stop cycle for about 4 to 4 and a half months. My gyno finally changed my BC to the Nuvaring, I still had a cycle for three more weeks but I think I've finally found relief. In my opinion, Apri was the worst BCP that I'd ever taken. It came with too many side effects for my liking.

I was prescribed Ponstel back in my early 20s for very painful menstrual cycles. I then changed health care companies and insurance and therefore had to change my gynecologist. When I tried to renew my subscription my doctor said that she would not, stated that it was "a horrible drug", never said much more and I didn't question her (I really should have but maybe I was less wiser about my health at 22 but then again it was an HMO, so they may have been cutting costs).

Ponstel would provide relief quicker than any OTC pain relievers that I'd used before for many months. Instead of waiting the usual 1-2 hours in pain waiting for the medicine to kick in, Ponstel kicked in (for me at least) about 15-20 minutes later and I could resume my day or morning with ease. I received positive results with Ponstel, hopefully, you will also.

Good luck!

[kkmaureen]

Sorry for the millionth post but what I meant above was that you should ask the doc for/about the Ponstel. Not the hysterectomy.  Sounds like you've got that covered.

[kkmaureen]

Btw...as for the rectal pain, feeling like you're going to pass out, and soak-throughs, ME TOO!  Isn't it awful?  Ugh.

[kkmaureen]

I'm so sorry to hear of your struggles. I've heard and read the same conflicting info about a hysto and whether or not the pain goes away. You really should ask your doc for/about it. I will say this on day 2 of the Ponstel...take it EXACTLY as prescribed, which should be 2 pills to start, then one pill every six hours. The drug is apparently very tough on the stomach, so you're only supposed to be on it 7 days in a row max. They actually only gave me 10 pills.  I read drug reviews of it last night and most said it's very effective.  You have to get that two-pill kick start or it will take forever to kick in, and after that take it on the 6 hour mark even if you're not in pain yet. Once the pain starts, taking just one pill takes 60-90 minutes to kick in.  It does work, though.  Go to this link if interested in the reviews. Note that they are hard to find...there is a link under a string of number buttons that says "Ponstel User Reviews" if interested in hearing from girls like us...http://www.rxlist.com/ponstel-drug.htm.  Find me on this board or thread if you do ask the doctor and let me know how it goes!  Best wishes for a pain free life for you soon.

[SoccerMom83]

I am 28 with four children. I was on low dose bc pills for years between each child. I was admitted to the hospital two years ago with strok like symptoms and was diagnosed with Hemiplegic migraines. My obgyn took me off of the pills immediately because the chance of having a stroke with that type of migraine doubles so adding any hormones would make the chances even higher. I got pregnant easily with my first three children, but with my youngest it was much harder because of the endo. We know we are finished having children but it's so hard thinking about having a hysterectomy at this point. I have done a lot research and have found so many mixed opinions on whether or not hysterectomy would even help as far as pain goes. I have nodules all over the ligament that holds up the uterus so I always have severe rectal pain during my period. I have had pain to the point that I feel like I'm going to pass out. I bleed so heavily that I have leaked through overnight sized pads and through my jeans. It's terrible!! I am definitely going to mention this medication to my doctor. The longer I can hold off surgery the better! Good luck with everything. Let me know how you make out at the dr.

[kkmaureen]

Thank you for replying!  The first dose of Ponstel was miraculous. I was finally pain free. Took dose #2 about an hour ago because I want to be pain free or I won't sleep. I would say I'm at pain level 2-3 now. So not to sound stupid but does that mean you can't go on the pill or IUD?  I've been on Microgestin 1/20 for three months and it's been a disaster. Non stop bleeding. My periods are horribly heavy normally. I am 41 and they get progressively worse. I fear that a hysto is in my future as well. God how I hate this disease. Back to the doc on Thursday.

[SoccerMom83]

I have never heard of this medication. I also have endometriosis but cannot be on any kind of hormone due to Hemiplegic migraines. The only thing that helps me with the severe cramping is naproxin. Please update with how you're doing and whether or not the ponstel seems to help. My doctor is recommending that I have a hysterectomy but I am not ready for that, so I'm just riding it out for now. Do you have heavy periods? Have you tried anything for them? I have extremely heavy periods and am anemic. I have tried lysteda but it didn't help.