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.
Hi!
I'm new, and just wanted to say thank you before I get into the depth of things. Basically, I've never been able to have sex, my periods were terrible and was finally put on birth control at 14 to control my periods, and make me more comfortable (which I was VERY grateful for!). For the past 6 years, I was also suffering with vulvodynia. I finally got that taken care of and had the surgery for that last December and FINALLY had sex with my new boyfriend and it actually felt good! That being said, I still had a nagging ache on my right side particularly when I dilated and it hurt like crazy. So back to the docs I go (this is so pricey awful!). He had me go thru an ultrasound and obviously it showed nothing (but glad I was able to rule out cysts). He then said that he believed I had endo, but wanted to put me on continuous BC. The only problem with that is that I feel awful anyway and now that I'm having sex I sorta want a period to reassure me that I'm not pregnant.
So my symptoms (usually by the third week of my pill pack lovely sometimes sooner ugh): nausea, fatigue like CRAZY, headaches, ovary pain, constipation with period and REALLY painful bowel movements, where I cry, nausea all the time, and lately after sex (and painful ovary after sex too) fun fun, and my lower back hurts like crazy too. I know this is probably normal, but I'm feeling awful.
My doctor said it was up to me to do the laparascopy, but I'll be honest, I am terrified. I have heard all kinds of crazy things, and honestly, my worst fear is that they won't find anything and this is just me. But I am so sick and tired of being sick every single day. I really just want advice, I have no idea where even to start, so any advice is really worth it.
I'm new, and just wanted to say thank you before I get into the depth of things. Basically, I've never been able to have sex, my periods were terrible and was finally put on birth control at 14 to control my periods, and make me more comfortable (which I was VERY grateful for!). For the past 6 years, I was also suffering with vulvodynia. I finally got that taken care of and had the surgery for that last December and FINALLY had sex with my new boyfriend and it actually felt good! That being said, I still had a nagging ache on my right side particularly when I dilated and it hurt like crazy. So back to the docs I go (this is so pricey awful!). He had me go thru an ultrasound and obviously it showed nothing (but glad I was able to rule out cysts). He then said that he believed I had endo, but wanted to put me on continuous BC. The only problem with that is that I feel awful anyway and now that I'm having sex I sorta want a period to reassure me that I'm not pregnant.
So my symptoms (usually by the third week of my pill pack lovely sometimes sooner ugh): nausea, fatigue like CRAZY, headaches, ovary pain, constipation with period and REALLY painful bowel movements, where I cry, nausea all the time, and lately after sex (and painful ovary after sex too) fun fun, and my lower back hurts like crazy too. I know this is probably normal, but I'm feeling awful.
My doctor said it was up to me to do the laparascopy, but I'll be honest, I am terrified. I have heard all kinds of crazy things, and honestly, my worst fear is that they won't find anything and this is just me. But I am so sick and tired of being sick every single day. I really just want advice, I have no idea where even to start, so any advice is really worth it.
I was worried they would find nothing and that I was crazy. What they found was my colon attached in two places, my bladder attached, my right ovary attached and my appendix completely engulfed in scar tissue.
The best advice I got from this forum was to make sure I had a doc that knew what they were doing. I did just that and a Reproductive Endochronilogist performed my surgery along side a surgical OB/Gyn.
They told me after the surgery that had I waited I could have very quickly advanced the disease to stage IV, which is significantly worse as far as treatment goes.
I would, in your case, find a doctor that understands the importance of the laparoscopic diagnosis and one who can remove any endo present. Not one who just says " it's up to you"
I was scared, I listened to my body, at times I thought I was crazy; turns out my body was telling the truth. This wasn't the end of my endo journey but I feel better knowing for sure what I'm up against.
I trust my doctor 100% he did my vestibulectomy in December, and I'm going to see him today. I don't know why he thinks I can wait, maybe there was an explanation that I never received? I just absolutely refuse to do continuous birth control, I feel like crap throughout the month and even though its gross, its still reassuring to get my period.
That is my biggest worry that they will go in and there will be nothing there, then what? I know its really neurotic and stupid, but it freaks me out that I will look like a hypochondriac if I don't have endo. I think you probably understand where I am coming from.
Can I ask what kind of side effects you experience/expect from your lap? I'm glad you're feeling good (or at least it seems like you're feeling good) that's reassuring! Good luck with your recovery, and please keep me updated. Oh, and how long is your recovery going to take?
But, with the help of some hydrocodone I'm mostly functioning. The doc said I should be feeling better in just a few short days. I gave myself a full week off of work and don't return until next Tuesday. I was told to go easy on myself for a couple of weeks.
I was seriously doubting myself as to whether or not I had endo. Worried I was being a hypocondriac considering my history of already having Celiac and Hashimoto's disease. Convinced I couldn't possibly have anything else wrong.
I'm glad I did the surgery, without it they never would have found my ruined appendix. Most of my endo symptoms included bowel pain to the extreme. During my period I bleed rectally too.
I was so worried I was crazy. I almost let that fear stop me from seeking diagnosis, don't do this to yourself.
There was a girl who just posted the other day that they didn't find endo in her but they did find vericose veins on her uterus which is incredibly painful in itself.
As women we have this guilt about being in pain, we down play our symptoms. Society does this to us as we'll "your a girl, your periods are supposed to hurt". During my journey I even had someone remind me that god made it this way because of Eve taking the apple. Seriously. We aren't supposed to hurt.
I'm 32 years old and something has been wrong since I was 12. It took me 20 years to take control and get this figured out. Had I done it younger we could have caught it before my organs decided to become one organ.
My mom finally took me to a doctor after she realized it wasn't normal, and they put me on birth control (after they read me the riot act and told me they knew I was lying and just wanted to have sex, YES that happened!). But I got my bc and it helped. But as of recently, the periods are getting worse, and theyre so painful. I would do the continuous, but it doesn't matter, I'm in pain, pain is pain, at least with having a period I get a week and a half to feel ok (is it bad that I'm grateful to have 10 days of pain free awesomeness?!).
But I'm not going to lie, I am TERRIFIED of this surgery, I heard that it could make your periods worse? Is that true? Are you bleeding from it now? And what about scaring (yes, I guess I can be vain the last surgery was inside, so NO one can see!). Your recovery sounds rough, but I guess it's ok if it helps you in the long run. This is me just being chicken.. I was freaking out about my vestibulectomy too, but it honestly was the best decision of my life. Now I'm worried, that a lap could potentially make me feel worse. Do you know if that's a possibility?
Sorry, I just like voicing opinions and getting ideas from other people. And I'm aware I sound crazy, but I just want to know what I'm up against, I suppose haha.
Thank you SO much for your response, I hope you'll get to feeling better later today :) In fact I'm sure you will, go for a walk after lunch, and hopefully that will help some more.
One more question, are you active? I horseback ride and gym a lot. Will I be able to return to these activities when I'm done with this procedure? (IF I go thru with it haha)
I was bleeding a bit afterwards but they performed the surgery only 6 days before my period is due.
I've read so many stories of women still experiencing pain after their laps. I've also read many stories of how the lap brought about relief.
Endo can't be cured. But a lap is the only sure way to know what they are up against. Until it has been looked at they are only just guessing what's inside.
I'm going on continuos BC with the start of my next period to stop myself from getting a period/ovulating. The side effects of that are going to suck but if it helps retard the growth of the endo and holds off a future(at least longer than without) surgery it's worth it.
There are some much harsher drugs out there that I would like to try to avoid.
Yeah im worried about my pain becoming worse I guess too. If this were a guy you.know there would be a.cure...
I guess my main concerns are if I do have the surgery and there is nothing there, I am going to look like the biggest hypochondriac of all time- but seriously my periods upset my life even on birth control where I cannot do anything and just want to die. I've been working for my dad because I've been taking so much time off for this crap, I'm sick of it! My other main concern is that if I do have the surgery, can it be made more painful? Because I will seriously not be OK with that, I already suffer every single day, I don't want more pain. I knew I wouldn't be done with my questions- but I am just SO scared.
My only saving grace is my boyfriend completely understands and told me he'd support whatever I decided to do. But still, its a huge decision (especially since losing an ovary is likely and I don't want to have an amputation lol). I really wish I were still under 18 so my parents could decide what the best treatment was, and that way I wouldn't have a choice haha nice huh?
I also have very painful bowel movements when I have my period- I know as soon as my period is about to go away because I can use the bathroom easier and it doesn't feel like I'm passing a horse out my ass anymore (sorry a little bit of gross humor lol). It just makes me mad, because men don't suffer and I have been suffering for years.
I bet that if you have surgery (& they actually remove stuff, not just 'explore') you WILL feel better after you heal. At the least the pain will be dulled. But usually you would have relief until the Endo grows back. So you can stop worring about how people might view you & take care of you! =D
I'm still incredibly sore from my surgery and am about to start my period. I can't wait for the next few weeks when according to my doctor I should be feeling a lot better. I'm feeling very positive.