(Closed) Endometriosis…who has it and can give advice?

posted 7 years ago in Wellness
Post # 3
Member
653 posts
Busy bee
  • Wedding: October 2010

I had the surgery a couple of years ago. In terms of the surgery alone it wasn’t all that bad, they put you out and I have a small incision scar below my panty line and another one in my belly button. My doctor said that sometimes they are able to burn some of the endimitriosis off during the surgery but unfortunately I had some on my bladder and she was unable to burn that off. It took me a couple of days to recover but I was back to normal within a couple of days.

My doctor did the surgery just to make sure so we could tell my insurance company. In my case my endimitriosis causes really frequent & irregular periods and terrible cramps. The best way to control mine is to prevent me from having a period. I was on Lupron for a year and that stopped my period within two months and it didn’t return for six months after I stopped, unfortunately it pretty much causes you to go through menopause so I was terrible emotional during this point. The thought was that stopping my period for this long would “reboot” my system.

Unfortunately it didn’t do what we thought it would and since that time I’ve gotten an Implanon implant. The Implanon implant has helped with my cramps but I still get a monthly period.

The only part that’s bad about knowing it’s endimitriosis for sure is that infertility is something that can be a side effect but as my doctor says, that’s not something we’ll know until it’s time for me to get pregnant.

Sorry if this is TMI, I just thought I’d share my experience with you. I hope everything goes well and that knowing for sure will ease your mind!

Post # 4
Member
196 posts
Blushing bee
  • Wedding: May 2012

I have endometriosis. I had surgery in January of this year to remove a grapefruit sized cyst from my fallopian tube, and they found endometriosis. I had a D&C to remove some of the cells, and I was put on Depo Provera to stop my periods. So far, everything has worked out well. They haven’t found anything new.

 

Good luck with your surgery.

Post # 5
Hostess
18646 posts
Honey Beekeeper
  • Wedding: June 2009

I have had 3 laps in the past 5 years.  Really they aren’t that intensive.  The incisions are small (at your pubic hair line and belly button) and the pain only lasted a few days with the help of drugs.  I did a treatment of Lupron for 6 months back in early 2006 but when the pain started again in 2008, the doctors didn’t want to put me on Lupron again because of the long term side effects of it.  The doctors haven’t put me on anything now and I wouldn’t want to do Depo like a previous poster because of the bone loss issue.

Oh, check with your insurance company that the doctor and hospital are both covered.  For my second surgery, my doctor was covered but the hospital was out of network so I had to pay $4k in costs out of pocket.

If you have any questions, feel free to PM me.

Post # 6
Member
16 posts
Newbee
  • Wedding: October 2006

I am so sorry to hear of your diagnosis.  Although I do not have endometriosis, a close friend of mine had it.  She found the Endometriosis Association to be a good resource, so I wanted to mention it to you.

Post # 7
Member
14186 posts
Honey Beekeeper
  • Wedding: June 2009

I’ve had two laps–the first one was AWfUL and i was laid up for a solid 8 weeks. The next one was done by a way more professional, way better physician, and i had it on a Thursday and was back at work on Monday. It took me about 3 weeks to get back into my jeans. I have a couple of 1″ long scars on my stomach, but they aren’t a big deal and have faded significantly with lots of vitamin e oil on them. Also–sunscreen!

After the surgery, i was put on Lupron, which put me in menopause and froze my reproductive system (i was 22 at the time and planned on waiting to have kids). I was then on birth control. When i got out of college, i started seeing a medical nutritionist and went on a low inflammatory diet (certain foods can make endometriosis worse–after all, endo is inflammation and when it flares up, ow!!!) and about a year and a half later, i went in for another lap and I’m in a sort of remission right now. Doctor said this sometimes happens, but being on the correct diet and being on birth control for so long (since 19, when i was diagnosed), has caused it to take a chill pill.

The biggest issue with endometriosis is that it can cause infertility depending on where it is–particularly if it’s all over your fallopian tubes. They can run a dye test and see, but just taking a good look at them should tell your doctor how you’re doing. Also if it’s all over the rest of your organs, they can help scrape that off (mine was on my colon and bladder and caused my small intestine to stick to each other–they separated it and put a mesh thing between it) because it makes everything “sticky” in there, so that’s another problem.

A lap should be relatively minor, though. You’ll get some swelling in your stomach–scrub pants will be your friend. I took a natural supplement called arnica montana (i know, sounds weird) that helped with the swelling. I took hydrocodone at night to help me sleep because every time my husband turned, i felt it (plus i am a side sleeper) but i’d easily say after 3 days i was doing good. I think i wore skirts to work for a week. No belts, haha. That’s right where your incision will be! So if you can get away with some dresses, skirts, and looser pants (wear them pretty low) you’ll be good. the incisions will be sore for a little bit. Twisting may be painful–i noticed i could walk just fine, but if i tried to, say, look over my shoulder, i couldn’t do that. Your belly button may leak a litttle–it’s a little gross. I wore bandaids over mine with some gauze underneath.

Post # 9
Hostess
18646 posts
Honey Beekeeper
  • Wedding: June 2009

If you have a good doctor, you shouldn’t notice the scars.  The one in my belly button is a little raised but people won’t see it unless they are looking closely and the other 3 (one on each hip and one at the pubic hair line) are basically gone now since my surgery last December.

Post # 10
Member
14186 posts
Honey Beekeeper
  • Wedding: June 2009

The lupron wasn’t that bad for me. It wasn’t FUN, but the side effects were doable….i also took calcium supplements to deal with the bone loss. And as far as depo, everybody responds differently–your friends may have had horror stories, but i was on depo for 6 months with zero issues. Everybody responds differently and you do what you have to do to protect your fertility, especially if they find out your endometriosis is really bad when they open you up.

Your scars will be pink at first, but within a few months, they’ll drastically fade. Unless you work in a bikini or something, by the time summer comes around, they’ll be baaaarely noticeable. Often, they can just use two incisions–belly button and pubic line. Sometimes they need another one or two, but they keep them small

Post # 11
Member
1279 posts
Bumble bee
  • Wedding: November 2013

I had a laproscopy just over a year ago now and it honestly wasnt too bad in terms of recovery. I spent the day at the hospital and the next 3 days on the couch and was fine after that. They should give you the proper pain medicine to manage any pain anyway.

I avoided the surgery for a few years, but honestly, it was such a relief to know it was definately endometriosis after all the pain I had been through. (So many doctors treat you just like you are a woman complaining about your monthly!)

The pain has been a little more manageable since then as well. I just stay on birth control and avoid having my period for as long as I can handle… so once every 4 months or so.

I have an incision in my belly button which you cant see, and 2 incisions over where my ovaries would be. They are quite low so you can barely see them even in bathers. Just use some pure aloe vera on them and it will help them fade!

 

Post # 12
Member
92 posts
Worker bee

I have the most severe stage of endo – I think it’s called ‘stage 4.’  I wanted to tell you not to be scared of the surgery.  It is definitiely worth it!  I put it off for a while and wish I had done it sooner.  I have had 3 laparascopies now and each time the surgeons have removed endo from the bowel, bladder, cervix and  ovaries – because mine is very bad it keeps growing back.  BUT the surgeon has told me that even though it will keep growing back, it will never be as bad as it was before the first operation, because they took out so much tissue.  My endo is much better now that they have taken most of it out and it’s manageable.  At my last operation they also gave me a Mirena IUD which is great because I only get my period a few times a year – which means most of the year, I’m pain free. 

My first surgery was tough – it was a 4 hour operation and when I woke up I was in very bad pain and I vomited from the anisthetic.  When the doctors say you will have ‘discomfort,’ they mean pain, but they will give you plenty of painkillers.  I was in hospital for one night and had to take 6 weeks off work to recover.  That surgery was bad because it was so long and they took out so much endo. The other 2 surgeries have been fine because they were shorter – I didn’t have to stay in hospital and only took about 2 weeks off work. 

My advice would be that it is definitely worthwhile.  The worst thing is the pain, but you will take painkillers for that, and it’s over after a few days, unlike endo pain which will keep coming every month.  I’ve had 3 ops but have no visible scars so I wouldn’t worry about that – the incisions are tiny. 

Also – I recommend doing lots of exercise, and strengthening your abs and pelvic floor before the surgery.  It will help you recover faster.

I hope this wasn’t TMI but I wish someone had told me that it would hurt, so I could have prepared for it.  PM me if you have any questions. 

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