can endo come back? how quickly?

Question

I had a lap. in march and once I recovered I felt SO much better!  I hardly had any symptoms and i was convinced I was cured at least for a long time.  It's been like 8 months now, and a couple weeks ago i started having symptoms again.  Now I have that consistant, terrible chronic pelvic pain again!  It's like the exact same way I felt before the lap. :(  It's getting really painful/uncomfortable and I'm back to taking almost 10 ibuprofen a day and it's really bothering me!  I'm so discouraged.  How quickly can it come back?  I also have endo on my ureter which was "unaddressed" in the lap, could that be causing me problems?  My doctor is having me come in tomorrow to reevaluate.  What do you think she will do about this? I'm getting so worried about this what is going on?!  Am I likely to need another lap?  I've heard scary things about endo on ureters and I'm getting scared :( I'm only 19 I feel like I am too young for this...

thebrat333 · Answer

hi :)  

Oh thats good !!!

hope it stays like that.

jess4412 · Answer

ok good news... crazy cramping has subsided, now its just the regular pain, and now i only have light spotting every here and there which is definately a relief.  I guess I'll just give it some time and see what happens.

thebrat333 · Answer

Hi I haven't been on here in a few days.......oh dear you definately need to see the doctor .....what are you taking for the pain????

I haven't had the bleeding but i have had a hydrothermal ablation so its a different scenario....it may be to do with the endo though.....if it is prob means it has spread rapidly .....poor you let me know how you get on at docs and tell him about the exams and not eating bit too!!!!!!

jess4412 · Answer

Question: is heavy breakthrough bleeding that lasts a long time with alot of pain a potential sign of endo being back?  I'm so frustrated.  I've been working on my physial therapy exercises just to give it a chance, and it hasn't been doing much, but a week and a half ago, I started getting breakthrough bleeding, and after just a couple days it was pretty heavy and cramping has just been increasing with the bleeding.  I stopped my pill for three days to get it out of my system.  Today I started again and it's still really heavy and so painful.  I'm a little worried.  I don't know if its the stress of finals at school, my worrying about endo coming back, the pain, or a combination of the three, but I can't eat anymore.  I feel so nauseated by the pain (and probably the stress and worrying) that I just can't get myself to eat, and it's definately making me feel worse, but I just can't do it.  I'm not sure what to do, or if it's even worth going back to PT, or if I should call my doctor again or what. :/

jess4412 · Answer

Oh, and I used to be a pilates and yoga nut, but ever since I have had pelvic pain, I've found that I am in pain afterwards, which really bums me out because I used to love it... Just like ballet too, it totally took that away from me.  I do love planks though, they really do some good toning.  If adhesions are a possibility, what can be done about that?  Do I just have to put up with it?

jess4412 · Answer

definately good points... He seemed a little out of his element... I did try to find other physical therapists that might be more helpful with my particular situation, but my insurance only allows me to go to one specific group, and nobody there has had a lot of experience with situations like mine, and I can't afford to pay out of pocket for another one, so I'm a little stuck :/

thebrat333 · Answer

Hi there 

i wouldn't reccomend sit ups either .  I do the plank for stomach muscles strengthening exercises and maybe try yoga or pilates for muscle strength if exercising makes the pain worse (works for me ) 

xx

achilles2 · Answer

I recommend that you see a physical therapist who knows how to treat pelvic pain such as adhesions-- this is one time I say make sure the PT is a female.

jess4412 · Answer

I went to PT today... the therapist didn't seem to keen on the idea of a muscle problem.  I don't know if that's because he has very limited experiene with this situation or if it's because he just doesn't think it could be that.  He said that I am still very fit and that muscle weakness is not very likely, and also found it weird that movement was completely doable but that I just had disomfort afterwards from it.  It's a weird situation... so there's still really no resolution.  He gave me strengthening exercises to do twice a day for three weeks to see if that makes a difference at all.

thebrat333 · Answer

awwww you poor thing !!!


I know how you feel as I have the same problems  and Iam still waiting for answers too. 
xx

jess4412 · Answer

I feel like I can't truly decipher what makes the pain worse and it's driving me REALLY crazy...  like I can name a number of things that don't feel so good with the pain (standing, walking, exercise, sex, urinating, occassionally bowel movements, but it doesn't neccessarily feel better when I'm not doing any of this) or make it less manageable, but I can't seem to identify one specific thing that significantly worsens pain... and it's really frustrating because I feel like nobody can help me if I can't identify it...  anyone have a word of advice for this situation? I feel pretty hopeless right now.

jess4412 · Answer

So... I pretty much haven't exercised at all in a full week...which is very out of the ordinary for me (usually work out for about an hour 5-6 days a week), and I don't feel much better :/ Now i'm doubting the physical therapy/musculoskeletal idea... which just makes me nervous about other things... I don't really know what to think about it.

achilles2 · Answer

If your ob/gyn is not an endo specialist (and it does not sound like he/she is) I recommend that you contact the endo association to find one in your area. A general ob/gyn does not know enough about endo to treat it properly.
Here is the endo associations website:
http://www.endometriosisassn.org/

I hope this helps,
achilles2

grace_adieu · Answer

I had surgery in may for ovaruan cysts and was diagnosed with endo...I believe they came back a week later but gyno ignored me and said it was "healing pains." went to internist and told him about pain and he had a vaginal ultrasound done and it confirned that cysts came back on both ovaries along with a fibroid tumor :/

I hate it as well. I'd never heard of endo until May and know Im 26 and the gyno has put a timeline on getting preggers. I keep telling myself "it gets better"

jess4412 · Answer

So, I have my first physical therapy appointment on tuesday morning.  I'll keep ya's posted about it.  Has anyone else ever had pelvic pain that was a musculoskeletal issue?  I'm really curious to see if this helps me

jess4412 · Answer

I went for my appointment today.  She said that it is pretty unlikely that endo came back this soon, especially since I am on birth control continuously and have experienced no other problems with it.  She wants to make sure I don't have any musculoskeletal things going on before considering a surgery again, so I will be doing physical therapy for a little, and then I go back in six months to see if it helped or if we need to consider another surgery.

achilles2 · Answer

I sent you a message

skepticalpeach · Answer

Endo can start to grow back as quickly as your next period right after your surgery. So, yes it is highly likely that it has grown back. She may just recommend having another lap. If she said that she had a good reason not to remove the endo on the ureter I would trust her opinion. Especially if you trust her general opinion. 

Try not to worry too much. Find ways to relax and not think about it. Sit under the heating pad and watch tv for a few hours or do whatever helps you relax. Stress will only make things worse. Trust me I know it's hard not to worry, but it will help you in the long run!

jess4412 · Answer

ugh i know :/ the thing is my doctor is nationally known for working with teens with endometriosis and has a great reputation.  She's been great with everything so I feel like there must a reason that it was unaddressed... she said something about leaving it alone because of the risk of blockage or complication or something along those lines... I don't know, but I really am beginning to feel miserable again, do you think its the leftover endo on the ureter thats giving me problems? I'm just really worried and don't know what to expect from my appointment tomorrow :/

achilles2 · Answer

I cannot believe that they left the endo on your ureter! No wonder you feel miserable. My doctor removes all the endo he sees and also does biopsies I have endo removed off my ureter. I recommend you find an endo speciaist. Can you get to NY if so this is the doctor you want to see:
http://www.nezhat.com/about_us_farr.html

I hope this helps,
achilles2

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