ALOHA~ Endo Stage 4, 39 yrs. 2.5 months Post Lap (chocolate cyst removal with HSG)Still in a great deal of pain... Anyone else?PLEASE HELP!

[laurenrosse]

Dear Fellow Endo Warrior Women,

Aloha to you all from my lovely home here in Hawai'i !!

Wishing us all well as we deal with and heal this painful disease. Thank you for your support in advance.

So here is my endo story: Right now I am 39 , 5'8" and 170lbs(gained 25lbs since surgery due to lack of movement due to severe pain ) I am an holistic health practitioner, massage therapist, and an strong athletic active healthy woman who loves to exercise, but I have always had very painful periods. I am bedridden by them but until a couple years ago, the pain was easily managed and only on my 1st day of my cycle, I would take 1200 mg of ibuprofen one day a month (i know its too much but very bad pain, needed to work) and be able to function.

I had a Known cyst for the past 7 years on my left ovary, but it was not growing. Then about a year ago I started having pain through days 2-3 of my cycle, needing ibuprofen. Then I ended up going to the emergency room twice this spring, once in april and then again end of may with severe excruciating pain after sex and in the middle of my cycle(like day 13) and surgeon said cyst was twisting my ovary (ovarian torsion due to cyst) and needed to come out. So June 8, 2018 I had my first and only lap so far.

Lap Recovery went pretty well externally, no infection or anything, incisions healed well and fast, no spotting, could pee and poo just fine, etc. But... I am still in severe pain internally on my left ovary almost daily post lap, PLEASE HELP!! It is on the left ovary that they removed a chocolate endometrioma cyst, and on the left side that they also found a hydrosalpinx of my left fallopian tube as well, along with Stage 4 Endo! Oh joy!!!

The surgeon wanted to take out my left side (tube and ovary) but did not because the HSG only showed dye coming through my left side hydrosalpinx tube and nothing on the right side. The surgeon left in my left ovary with the hydrosalpinx tube to try to preserve my fertility, but she says that my whole left side is very damaged. She wanted to take it out, but did not to preserve any chances of fertility, as per my request. Now Since June 8th, I have been in severe pain pretty much all but 2 non consecutive weeks. Pain is basically the same or way worse since my lap. Surgery seems to have made things worse , not better, even though I have a good surgeon. They found the stage 4 endo with many spots all over, but my pelvis is not all adhered with much scar tissue, just the hydrosalpinx.

My main questions are:

1.)How long does it take to heal internally? Anybody get better and better 3-6 months out? Will I still improve or is this my life now? Right now is 2.5 months since lap...

2.)Anyone else have severe pain this long internally post lap that went away later?

3.) Anyone have a hydrosalpinx, and conceive? Did you have severe pain?

Always wanted kids, never been pregnant yet. Sad but also I am accepting... as I get older they seem like a lot of work and my fiance has a kid who loves me so even if we do not conceive , we already have a 4 year old from his previous relationship. He is open to having more kids for/with me, he is a great dad and loves kids, financially stable etc and truly loves me and also is fine without anymore kids. So no pressure there, it is kind of ideal and he was great through the surgery too, so supportive and understanding. I already went through all the comparing my self to women who are fertile etc. I am ok with it all now. But i am not ok with this much pain as I take so much advil my kidneys might get damaged.

We want to conceive, even though I understand there is a minor chance of that but we will try through next year, hey miracles happen right!

Anyway, I am adapting and not going to let this painful disease debilitate me. But curious of your experience and sending you all strength and support!

Thank you so much for your time and attention and looking forward to your responses. Thanks again everyone, I have already received so much guidance and support from this group!

Best best wishes,

Lauren

[Char411]

I’m so sorry to hear you’re in a lot of pain post lap

I am afraid I don’t have the answers for you, only a similar story. I am also 39 and had my lap and endometriosis lasered in May 18 and like yourself I healed well externally, no infection, good clean wounds etc, however my endometriosis pains seem worse since the lap, much more intensified, especially lower left side and back pain. I too have been holding out for improvements as I heard it can take up to 6 months to see an improvement but I’m over 3 months in and no improvement, just worse pains.

Always here if you need to talk

Sending big hugs to Hawaii xxx

[laurenrosse in reply to Char411]

Thank you SO much Char411, yeah, it's sounds the same as me. Really appreciate you sharing that, it's good to know I am not the only one! Will check in later to see how you are doing... I hope we both can get free of this pain..

[Hidden]

I had different problems as my ovaries were not involved, but I’m six months from surgery and still have cramps and a constant pain/niggle in my right pelvis where the biggest endo bits were removed. I’d highlight the pain to a doctor just in case, but it seems it really does take many many months for some people to heal. I still can’t run much as it still feels like things are painful inside. Good luck!

[laurenrosse in reply to Hidden]

thank you so so so much for this too, its helpful for me to know I am not alone and that it can take a while for some of us to heal... wishing you a full recovery , some how , some way..thanks for your reply, aloha