Hey Alana,

If you had an official diagnosis it would make sense to give it some time, but the fact is you do not know what is wrong is why you need answers.

I know you are scared ... we all were before we knew what was wrong BUT you have to let your determination to get answers outweigh that fear.

Everyone case is different. None if us wants multiple surgeries. So please stop calling us stupid for having them. If you truly have endo you will learn that endo con especially back. In my case adhesions stuck an ovary to uterine wall more than twice so I not only had endo pain but that pain. So I had to have surgery every 3-4 years. You do what you have to do whatever the situation.

I never said you were stupid- actually I admire you! Maybe things come out wrong since you're only reading stuff and not really interacting or for that matter know me. Or maybe I have a poor choice or wording. I'll put the blame on myself! In my opinion I think it seems silly that there's no other treatment available to help you (and potentially myself). But is that your fault? Absolutely not! Personally, I am terrified of surgery maybe you guys think I'm stupid or silly, and you're ok with your opinion! That being said, I do apologize if that's what you thought- because I most certainly didn't mean it that way! I suffer from vulovdynia as well (which there is less treatment available for that!) the medical field for us women sucks entirely! A lot of what I post is venting and frustration- something I think EVERYONE here can understand. I am set up for a lap in August- I haven't changed anything and am going for a consult on Friday to discuss my fears (haha!) and what was discussed at Cleveland Clinic for my second opinion!

I am sorry that any of us have to deal with this it's a shitty way of life. But it's the card "we" have been dealt with. And I say "we" because if I don't have endo, I'm pretty sure I have something else. Which sucks. Yes, I want to get to the bottom of it. Yes, I want answers. And yes, I am freaked out.

Another unfortunate thing for me is one of my friends just had a lap 2 weeks ago. She woke up seizing and had to be put in the ICU for 3 days. High fever and they thought they were going to have to go back in. Fast-forward to now, and her pain is worse and she's worse off than before surgery. Does this happen to everyone? Probably not. She may be in the unlucky statistics, but it's still in the back of my mind. She tells me EVERYDAY that she regrets getting this surgery. It's affecting the way I think now too. I mean we can sit here saying "what if" all day long and chances are it won't happen, and I know that! I hope you understand what I'm saying though when I tell you my friends story and how I've been reacting to it.

Again, I apologize. I seriously do not think anyone is stupid. Quite the opposite. And when I say "ridiculous" or other such words its more of a "I'm fed up there should be something more". But there isn't and I guess we all have to cope and come to terms with this the best we can.

Oh, and again, as always, I DO appreciate your advice and encouragement! :)

I appreciate that. :-). It is very frustrating dealing with any type if chronic pain esp something like endo. I definitely understand your frustration. I just dont want that to get in the way of you getting answers that are needed for you to make accurate decisions.

Im sorry about your friend and im sure that's not helping you. But no it doesn't happen to everyone. And some if us wake up with endo pain gone and some do not ... you just never know but what you must know is that answers are needed one way or the other.


((((HUGS)))

Thank you! Yes, rationally I know that, but sometimes (more accurately ALL the time) the unknown freaks me out lol. My last surgery (vestibulectomy) was a huge success and I know that having the same surgeon is having good odds, but you just NEVER know. My greatest fear is that I'll be made worse, or there will be nothing there in the first place and I'll look like an idiot! But again, cant go on what ifs lol

I'm with kdeezy and valley on this....and I do not think anyone was attacking you. But it is very frustrating for you to constantly be asking the same questions that we answer the best we can for you but because you don't have a diagnosis, some of what u ask is difficult....and some we just can't answer. I find it offensive that you say it's ridiculous to have surgery after surgery when you have no clue. No of us really care what you choose to do, it's your body...but at some point it seems not ok to me for you to be on here for so long giving advice to others on endo when u don't even know if u have it.
I hope you find answers but seriously we can't answer these questions for you....we don't know how u will be after surgery. I hope your Dr can give you great guidance! Hugs

Christine- I wish you had read above- I said it was ridiculous that its the only answer that we have. Meaning medical science cant come up with anything more than this. That surgery after surgery and you all are still in pain is NOT ok that you suffer daily. And there are few answers! It's "ridiculous" out of frustration not out of I think it's stupid or whatever (please see above post). Not that you're ridiculous to have surgery- obviously you'd stop at nothing to stop having pain, I get that. Obviously there is research going on and maybe one day that wont be the case! We can always hope, right? But in my opinion, it seems "ridiculous" that this is the only option. Trust me, I get it, I had half my vagina hacked off because of vulvodynia. Yes, it offered relief. But really this is the ONLY thing they could do to make me feel better after 7 years! I find that ridiculous too. And sad that there isn't a lot of research nor awareness of endo or vulvoldynia. Both are equally horrible diseases and we're taught to be quiet about it and accept that very little is being done about it (though it's getting better slowly! So that's good!)

Unfortunately, there's not much I can do about it and I'm happy I'm out of misery. Which is what will be great about a lap. Unfortunately, I cannot hurry up a surgery date any faster haha I was supposed to have had it done in June, but that just never happened as the scheduling department screwed up and never booked me. And then my doc was out of town, so I didn't want to be doctorless while I was recovering. I'm sure anyone can understand that.

My main question once again was about the birth control and what you all thought about the pain going away and a missing period. Not to mention I am in wayyy better moods. Can some people just not tolerate birth control?

Once again, I'm sorry if anyone took anything offensively as I did not mean it that way. I can go on and on and apologize. I cant help the way I feel and I can't help that my body responded positively to something (finally) and now I'm questioning it. Is it in my head? I've been told that for years, so I could go that route, too! I was asking questions not to cancel surgery per se, but to see if this same experience may have happened to anyone else.

I wont ask anymore questions nor will I post. I'll figure it out and be happy with my decision, and I hope everyone gets relief as well.

Were you having the pain before the going on the pill?
& yes some people can't tolerate birth control....I'm one of them.

I went on the pill at 14 so I don't really remember I just know I had periods from hell that would last 3 weeks and come sporadically. I'm assuming there was pain, but can I say for sure? Not really. I just remember they were super heavy and icky.

I had horrid migraines though and I think I know I would miss school. But docs would always be like "it's normal because you're so young". As I was flooding jumbo maxis in an hour.

Well my "missing" period has arrived! And isn't so terrible. So that's good news! I'm actually strangely relieved that I have it (yes, this is coming from me!) So I guess we will see what doc has to say, but I'm liking this positive spin on things regardless. This is so weird haha

Christine, I am not happy that you cant tolerate bcps but I'm happy to know I am not alone on this crazy journey. I forgot if you said if you were taking anything for endo now. But if you are, may I ask what you are taking? I just hate how my moods were always so blah. And I know that docs use the pill and other such things to suppress growth especially after surgery, so I'm wondering what you use? Thanks!

I'm not talking anything at the moment. The only thing I can really tolerate is the Depo shot....but even now each time I'm on it I notice a side effect I didn't have the last time so I only go on it if I desperately need to (I was having non stop heavy bleeding for weeds about a month after my last surgery...I had a cyst on my left ovary that was pretty big & causing the bleeding). My body seems to finally be regulating itself with just one ovary. I have never been able to tolerate any kind of bc that has any amount of estrogen in it.

Ack the power went out I had a whole response too. Florida is so ADD with the weather today haha and it wasn't even lightening. Sooo my doc wanted me to try depo, but because I get suicidal and manic on bcps, it's not really an option anymore :( I realized that once I came off my moods were so much better and I'm less bitchy, not to mention I don't want to off myself anymore either haha. I remember you mentioned you were bleeding after the surgery, did it finally stop? And do you get monthly periods (this may be a really dumb question) or if you're not on anything, did they somehow get it to stop for you? I'm glad your body is regulating well to having one ovary hopefully that means you're feeling better too :)

They have a Provera pill you could try if you didn't want to commit to the shot.It's only progesterone so I didn't have issues with it like regular bcp.
Yeah, the bleeding want from the surgery though....it happened about 4 weeks after the surgery...I think it happened because of the large ovarian cyst as well as my body trying to readjust to one ovary. Things aren't too bad right now. I'm periodically having some really sharp pain where my right ovary use to be....I'm guessing from scar tissue...My body likes too make a lot of that! LOL!
I need from Dec 5 until the end of Feb....I got the Depo shot on Jan 9 so 7 weeks of that was while on the Depo. It ran out April 9 & then I was getting a period every two weeks. Last month it came at 22 days...I'm close to that right now so hopefully it's getting back on track! I need to make an appt for my yearly physical but was waiting to figure out when I wouldn't be bleeding to be able to do it!
I have a friend who had an ablassion and hasn't had a period since. I can't do that because I have a fibroid but that might be an option for you.

Its something I'm looking into actually! But right now I have.my period and very little blood so we'll see what happens! Haha its like Russian roulette with my body eh ill be a jerk here naw we'll live in peace. Im glad you're at least feeling better! Maybe because your estrogen is lower you won't feel as crappy? Haha

That is my hope!!! My period have actually been pretty painful since surgery but I haven't really had pain outside of my periods....so I gutted that's doable. I have fibromyalgia so I'm always in pain!