Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
So...I had my 2nd lap yesterday, and wow did it NOT go as planned!!! First of all, the plan was to remove my right Fallopian tube and to remove any Endo spots. Well, I get out of surgery, and I keep asking what they did, and no one will tell me anything. All they said was you will get a packet (which I never got) and I had to wait for a month for my post-op appointment. Oh, & the only pain meds they gave me when I was discharged was 15 Vicodin. So the Vicodin was NOT working, & this morning I went to Army sick call. You would think the people who are most hurt would get in first....but NO. I was just about the last person seen & had to wait for 3 hours. I was just crying because I was in so much pain! Finally the nurse practitioner saw me & called my surgeon (who didn't answer). She was only going to give me 5 Percocets, but I think she just felt bad for me so she gave me 20 of the really strong ones. So, with the pain problem solved, there was still the issue of what the heck did they do during my surgery? Well, the surgeon called me about 10 minutes after I left sick call, & this is what she told me: my right Fallopian tube and right ovary were full of scar tissue & they were adhered to the walls, and she couldn't do anything about that. My left ovary was adhered to the wall, she couldn't do anything about that. My left ovary & tube were healthy. She saw Endo spots going from my kidney to my bladder and they were also on the line that runs from kidney to bladder, and she didn't do anything about that. There were adhesions (which I don't know if by adhesions she meant Endo or scar tissue?) behind my uterus, and she removed that. So basically, out of all this bad shit she found she removed the most minor of things because she was too scared/untrained to deal with the bad stuff?!?! WHAT!?
Oh, & to top it all off, she said I have ZERO chance of getting pregnant while my right tube & ovary are stuck to the walls & all full of scar tissue...not sure exactly what she means, but hell I am getting off birth control (Mirena) if that is the case!! Why not if I can't get preggo? I do not want to get pregnant right now by ANY means, but the option someday would be nice. Please help me with your thoughts...this is a lot to take in & I really don't know what to think of it or really what it all means. I am a little scared, but I do know that I am a fighter & eventually I will be fixed (I hope)!!!!! Sorry for the long post, but I felt you guys would want to know the whole story...too much for one 24 hour period!!
Oh, & to top it all off, she said I have ZERO chance of getting pregnant while my right tube & ovary are stuck to the walls & all full of scar tissue...not sure exactly what she means, but hell I am getting off birth control (Mirena) if that is the case!! Why not if I can't get preggo? I do not want to get pregnant right now by ANY means, but the option someday would be nice. Please help me with your thoughts...this is a lot to take in & I really don't know what to think of it or really what it all means. I am a little scared, but I do know that I am a fighter & eventually I will be fixed (I hope)!!!!! Sorry for the long post, but I felt you guys would want to know the whole story...too much for one 24 hour period!!
I'm sorry you're in such pain, I had bad pain after my second lap as well. I am almost a month out and I am finally feeling better - don't push yourself until you're ready to push. That is absolute CRAP that they only gave you 15 Vicodin. That might be enough to get you through a single day if you're hurting badly enough.
Will your insurance cover you seeing a reproductive endocrinologist? I think you really should see one. What you're describing is basically what happened during my first lap...they found a TON of endo all over everything and didn't remove any of it except for one endometrioma on one ovary. The specialist I now see got it all during my second surgery except for a chunk on my intestines that will require a GI surgeon to remove at a later date. I totally understand your frustration - like you're going through all this pain and discomfort for nothing. Well, at the very least you have a surgical report to bring to a specialist so he/she will know what to expect when they unfortunately open you up for a third time :( Big, big hugs...I hope you start to feel better soon and find a new doctor even sooner!! xoxo
Oh, by the way: You may have zero chance of getting pregnant from your right ovary, but the left side is healthy so I would tread carefully going off birth control!
I see why with a first lap endo is often left because it's above a surgeon's skill level but with a second lap they already know you're going to have endo so I hate to see this happen :( As much as it sucks for a doctor to say your case is too hard for them it'd be so much better than unsuccessful surgery. In the end it's better that she did not attempt something outside her skill level, but it certainly doesn't make it any less frustrating.
I agree with kDeezy about the birth control. I've seen too many ladies who are told they will never be able to have kids end up pregnant when they stop BC! Which isn't a bad thing of course, but only if you're ready for it. It might not happen but be prepared that it is possible.
For now take it easy and let your body recover...unfortunately we can't go back in time so hard as it may be try not to stress yourself out and get some rest. Hugs and so sorry you're procedure went this way....stay strong!
Now about the BC issue. I was infertile because of endo (did IVF), but I still got pregnant, but since my Fallopian tube was compromised, it turned into a long drawn out miscarriage, which turned out to be an ectopic pregnancy. It ended with my tube bursting and me going into emergency surgery. I do not recommend that of anyone!
As for what to do next, I hope our other army DS sister will chime in because I bet you have tri-care. Sigh. Tri-care. I hope she has better recommendations than I do.
Btw, I am so happy you are safe. Sorry this was such a debockle. Hopefully in time this will get fixed. Hugs.
However, as wonderful & perfect as this appointment went, I did find out more of what she found during the lap. On top of my ovaries & tubes being attached to the walls, my uterus was also attached, and she 'unstuck' my uterus. She also said the Endo near my kidney & bladder & on the line that runs between both was pretty bad & she was afraid of injuring me. The only thing she didn't seem to look at was my bowel, which I really wanted her to look at. So basically she said my Endo is stage III, which it was, but I am a little worried that it is still that bad when I had a lap only a year & a few months ago..is that normal? Thanks again guys!!!! You all are so supportive!!
poor dear, I wish I could wave a wand and make all the pain go away! That doctor at least owed you the decency to tell you right after the surgery all of this. I would make it clear to her that making you wait was not only rude but Really bad "bedside manner", borderline unethical even.
Scar tissue and adhesions are two phrases describing the same thing.
To answer your second question, yes, Endo can grow back in a few days, not just a few weeks or months. Mmany doctors only scrape the surface and don't dig out the rest of the Endo, so it's still there to grow back. To take out a wart, you gotta dig out the roots!
As far as not getting pregnant ever again, I wouldn't trust that doctor to be "God". Women with Endo CAN have children, though it may take more effort and time.
Hang in there, and make yourself heard. The least that doctor can do is give you strong pain meds to help manage your pain. Praying you find relief soon! {HUG}