I am 29 years old.
I have Porphyria and Chronic Ulcerative Colitis.
I was JUST diagnosed with Endometriosis- BUT I did NOT have a laparoscopy.
I have seen two specialists in endometriosis who BOTH said that laparoscopic surgery to remove whatever endometrial cells they suspect are growing on my large intestines, colon, ovaries, etc. should be removed and that at the same time they should place in the Mirena since it is the only hormonal treatment option for Porphyria that if it causes Porphyria symptoms, it can be removed, unlike Depro that's a shot and cannot be reveresed
I am extremely distressed about the surgery.
BUT my pain hits me without warning and it's extremely bad when I have a bowel movement.
Please if anyone can help answer these questions:
1) What to expect with surgery?
2) How much pain are you in afterwards?
3) How long does it take to recover?
4) Does it hurt to use the bathroom (#2) if that's where they are removing endometrial cells?
5) Did it help your pain diminish and also did it help you be able to conceive when you were ready?
I was pregnant 3 years ago and my husband and I were devastated when I was unable to get through the first trimester. I stopped breathing several times within the first trimester so the baby would've had permanent brain damage from the loss of oxygen and the medications the doctors needed to give me in order to save me.
So I have been through the ringer and I'm extremely traumatized.
I need advise, please if you can help me know what to expect. And PLEASE DO NOT SUGAR COAT IT! I NEED to know what to expect the GOOD AND THE BAD.
Thank you so much and I wish you all the best and the best of health.
I am sorry that you are going through all of these health issues. I hope I can help answering some of the questions you might have.
Mirena is a coil they insert during lap surgery that is supposed to be the best for deep infiltrating endometriosis and it seems like your only option.
I have never used it because I have had a previous case of PID and it can cause an infection and will reactivate the PID again and I never want to go through that again. I have heard good and bad about the mirena.
First things first is
Is your doctor excising the Endo or lasering it out? Excision is the best method so please make sure this is what they are doing, you will have a better outcome if they do.
Are they doing it lap not open surgery? This will all be relevant when it comes to recovery time. Lap is usually 2-3 recovery where an open operation is usually 4-6 week.
Pain depends on what they find and what they do. My first surgery as you can see in my profile and journals was radical and I had a lot done everywhere. I was in severe pain, could not pee in recovery, and was on a morphine drip until the following day. 1 st week was hard, 2 week I started to feel better, 3 week I went back to work just didnt lift anything
The second surgery was nothing. Scar tissue and endo was removed, bowel obstruction fixed. Recovery was so much faster, I was better after 3 days and went back to work after a week.
I had rectovaginal endometriosis as well as sigmoid endometriosis and I went #2 a couple of days after the first surgery. It didnt hurt at all and I lived with rectal pain since I was 16 so I was relieved at how great the surgery worked for me. The second surgery however maybe because of the bowel obstruction took me over a week to have a BM but I am fine now and regular as I am ever going to be LOL.
I had such a great surgeon that removed ALL the endo and that is what you need I can not express that enough. there are so many women out there that have had over 10+ surgeries because they do not have the proper surgeon that knows what he is doing. I got lucky but I searched for a year and I am glad i did.
If you tell me where you live I can let you know from my twitter endosisters where the good ones are in your area.
Things to prep for.
Have meals already made for the 2 weeks
Have lots of magazines, movies, on hand after the surgery
rest rest rest and recover slowly dont rush to do anything
You will have pain in your chest and shoulders for about a week after the surgery from the gas from the surgery. It will pass
Bring a pillow for the ride home you will need it to put on your lap so that when you go over bumps it doesnt hurt.
Bring mints so that you can get the pastiness out of your mouth after the surgery from the anesthetic.
I can say to you I feel so much better than I did after my first surgery. If it wasnt for a stupid PID infection I contracted I would never have had to have the second one that caused the bowel obstruction. I also had a presacral neurectomy done which severs the nerves from your uterus to your spine. So I cant tell you what worked the PSN or the Excision or both. I am just happy I dont have pain anymore. Key is Excision I really cant express that enough.
I have been on Lupron and Visanne throughout the last 7 yrs but mostly Marvelon which is a continuous BCP and I dont get periods. Does Hormones work? According to the top respected retired doctor in this field he claims that it does nothing for endometriosis and it will grow back.
the hormones help with the cramping and not getting pregnant.
If you have any questions please feel free to ask :)
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