I'm seriously at my wits end with this!

[April_Marie]

I'm 25 and I'm healthy. Back when I was 19, I started having very bad lower abdomen pain. From the time I was 19-now, I've had three laproscopic surgeries and a diagnosis of IBS with PCOS. A couple of months before my 25 birthday, I went to my doctor for my regular checkup (my OBGYN) and as he was doing the pap smear, it was causing me extreme pain to which his response was "well, that's not normal". He then proceeded to ask me questions about my period and how much pain I was in during them to which I responded that my periods incapacitate me. He made the executive decision to do another laproscopic surgery (this would be my third, as mentioned above) and was successful in removing 5 lesions. He then put me on the 4 periods a year therapy. I thought I was home free after this until a couple of months ago. I started having extreme pain once again with my period. And this time, the cramping was continuing past my period. And it wasn't just my abdomen, it was also my lower back as well. After two months of dealing with debilitating pain, I finally broke down and called my OBGYN who is a very very sweet man. I told his nurse what was going on and she said we can get you in early as September 7 (this Friday). In the mean time, she called me in 45 Lorcet. Honestly, I thought, great, this is more than enough medicine to last me. Well, that was until today when I ran out. I called for the appointment on the 23rd of this past month and in that short amount of time, I managed to take all 45 Lorcet's he prescribed me. It was that or when my cousin and her husband was over here for the labor day weekend, he snuck into the medicine cabinet (he has been known to do that). I don't count my pills so, honestly, I have no idea. But I find it very hard to believe I'd go through 45 Lorcet's in just 11 days. It doesn't make sense to me. Anyway, I called today to see if I could get another refill to get me to Friday when my appointment is. The nurse told me (and I was afraid of this) that he couldn't call me in anymore. That if 45 Lorcet's could not last me until Friday, then I needed to go to the ER. Right as I was about to hang up with her and pack my bags to go to the ER, she said "Oh, wait. Are you free today? I have an appointment open today." I emphatically told her yes I was free. I mean, I stayed home from work today because of this. I'll come even if I have to crawl in. So, at 2:30 I have an appointment with him.

Honestly, I'm ready for a hysterectomy. I'm tired of the pain. And how many laproscopic surgeries are these people gonna make me go through before they actually say "Okay, maybe it's time for a hysterectomy". I don't plan on having kids. According to my doctor, it's impossible for me to have them anyway so, why do that to myself? I have to agree, to be honest. I'd rather have a hysterectomy and be free of Endometriosis and adopt a child that really needs a home if I want to be a mother one day then live in this constant pain. I'm talking to him today about what my options are and if he mentions a hysterectomy, I will not object. I will more than likely oblige. Because this pain is so horrific. Anyone else out there experiencing anything like me? No one in my family tends to understand and honestly, I need people who actually understand my frustrations and my pain level.

[Des_a_rae]

Lol I don't blame you!  Take it easy!!   Good grief, around noon?  Ugh!  We're they behind for a reason??  
I'm SOO glad everything went good.  Glad they got all of that out and hopefully your recovery will go smooth and you'll feel so much better soon. :)   Try not to over do it and try to rest. :D  

[April_Marie]

I got home from the hospital a couple of hours ago. I got up there at 5:30 in the morning and didn't get taken back to surgery until straight up noon. They did the surgery and, of course, I woke up in extreme pain. I was allowed to go home right after I got out of recovery and I've been in bed ever since. I went to the bathroom the first time about 30 minutes ago and noticed I was bleeding. I started my period about 2 weeks early which surprised me. But I chalk it up to the surgery. They removed 7 lesions of Endometriosis and was told that the cyst was not ruptured and it was not two cysts. It was just one big one. I'm in immense pain but Percocet is my best friend right now. I'm just taking it extremely easy right now. the pain is bearable if I'm in a slightly laying down position. I can't stand sitting straight up and I can't stand or walk for a long period of time. It hurts if I do. So, I'm by all means allowing my parents to spoil me rotten.

[April_Marie]

I'm on my way to my pre-op appointment right now. I wish it was me going to the hospital and having my surgery right now. But I have to wait until Friday.

[Des_a_rae]

Well I'm glad they helped you! It's nice to have that!!  I completely understand about wishing to fast forward and get it over with. I feel that way every month with AF lol.  Blah, I hate that we have to hurt this bad, but hopefully your surgery will be a success :D  and hopefully I can talk to my dr. and get something scheduled for myself :).  

[April_Marie]

When the nurse called me back yesterday, she explained that because I was in the 5 day period of having my surgery that I couldn't take ANY NSAID's. At first, she thought that the Lorcet Plus wasn't cutting it for the pain and she was like "And see, we can't give you something like Vicoprofen because you're in the five day window before surgery". Vicoprofen is hydrocodone and ibprofen. She was like "I could let you try Ultram." Well, there's two problems with Ultram. One, it's WEAKER than Lorcet Plus. They only recently put it as a controlled substance. It use to be not even good enough for controlled substance. Plus Ultram makes me violently ill like Morphine. But I wouldn't dare tell her that Ultram was weaker. I'd be labeled as a drug seeker. So, I just told her that Ultram makes me sick and that the Lorcet Plus was cutting it for pain. Her words to me were "Okay, girl. You better make this last." Well, 25 will more than last me. Just one more day until pre-op. Then it's 3 days until surgery. I need a fast forward button to go ahead and get this over with.

[April_Marie]

And he did! I love my doctor! The nurse called me back and I answered and she was like "April...you gonna make it to Friday?" to which I responded "Gawd, I hope so.." I'm so blessed I have a great relationship with my doctor and nurse. She and I shared the same concern...the pharmacy red flagging me for having a certain amount of narcotics called in. But it's been cleared through the doctor so, the pharmacy can't really say anything since it's coming straight from the doctor himself and it's not that many pills. Hopefully, there won't be a problema.

[April_Marie]

It is a shot but I have no idea if you can stop it. I doubt it. Because you go in for an appointment and the nurse gives it to you there. I kinda don't have a choice because this is part of my particular therapy. The pain wasn't that bad a couple of days after my appointment so, I stopped taking the pain meds. But dear God, I came awake last night  with the pain all over again and when 8am comes around, I'm gonna call my doctor and see if he'd be willing to call me in just a little bit more to get me to Friday, which is surgery day. When I stopped taking the pain meds, I flushed them to keep certain people in my family from stealing them. I don't like enabling an addict. I pray after I have surgery that Mr. Sticky Fingers doesn't get happy and take my meds like he's done in the past. But I'm praying that the doctor will be compassionate enough to let me have just a few more to get me to Friday. I mean, I have a 2mm cyst and one that has ruptured. Add that along with the return of Endo, I think I'm justified pain meds when I call. Don't you?

[Des_a_rae]

Thank you!

Yeah I completely agree.  I sit and think to myself.."WHY have I lived my life in this pain for this long?" and I know it's because deep down in my heart I THOUGHT I'd be a mother by now.  I'd live through this pain for another year IF there was a guarantee that within that year I would conceive, but no one knows for sure.  I'm NOT going to live the rest of my life like this though.  I'm fed up and over it.  

Once you start taking the Lupron, can you just stop it like that?  Is it in a shot or pill form?  For some reason I was thinking it was a shot?  Maybe I'm confused by reading into to much at one time lol.  Anyways, I REALLY hope between the surgery and the lupron you get the relief that we all need!  I pray it works for you and you don't have any really bad side effects from it, IF any at all.  

[April_Marie]

Oh, please! Don't apologize! We are all going through the same thing here. As for my Lupron, I'm getting it delivered straight to my doctor. So, his nurse is gonna order it herself and then they will call me for a payment method. If it's cheapy cheap, I'll pay for it myself. But if it's not, I'm sure I can get a loan from someone. The nurse said the same thing--that only mail order pharmacies will be covered under my insurance. So, I didn't even try to take it to Kroger to get it filled. I won't start it until after my surgery but still. If I have any ill side effects, I'm stopping the Lupron. If my doctor refuses to operate on me in case this doesn't work again, then after my surgery, I will be looking for a new OBGYN who will be willing to operate on me and perform a hysterectomy. I refuse to go through this crap again.

[Des_a_rae]

Thank you ladies so much.  

I just want to apologize to April_Marie though, I'm sorry for bombarding your post with my questions.  I will start my own lol.   I'm hoping and praying you get some relief soon, it is a horrible disease.  Please keep us posted!!  Will be thinking about you!!

[achilles2]

I forgot to add, that if needed you can get your add-back compounded. I have to get mine compounded because they both have lactose monohydrate. It costs more but it is so worth it. I wrote a note to my doctor asking to have my meds compounded w/o........................... (the list was long) and he sent a script to a compounding pharm having them compound the meds w/o all those ingredients.

[achilles2]

(The message got submitted before I wanted it to.) You can have it delivered to your doctor (if you doctor does not care) but I like delivered to me that way I know I am getting it on time and there won't be some crazy mix-up before it gets to the doc.

achilles2

[achilles2]

I wonder if you are not reacting to the inactive ingredients of meds. I cannot have bcp because they also put talc and lactose monohydrate in them. Some might even have sodium laual(th) sulfate (If you are allergic to sulfa drugs you need to avoid this ingredient. Basically April_Marie covered the side effects. So since you have a 20% co-pay Lupron will be about $100 but with the coupon it will cost around $10. Also double check with your insurance about how they want to send it to you. I was able to pick-up my first at the pharmacy and then when I tried again the pharmacy proceeds to tell me that my insurance will only cover Lupron from mail order special delivery pharmacies. I know Walgreens has one and I assume that any pharm chain would have one.

[April_Marie]

Your most common side effects are those of menopause. Hot flashes, night sweats, etc. That's when you get on the Add-Back as well. The title is literally what it is. They "add back" some estrogen to counter attack the side effects of Lupron. Another downside is that Lupron is an injection. Doesn't come in pill form.

[Des_a_rae]

That's what mine is...I pay 20%.  I would rather just go for another surgery for a "fix" for the time being.Is it possible for it to cause THAT much scar tissue??    I STILL want to try to conceive, I STILL need to get DH down there for a SA.  I feel like I'm being rushed and it's been 13 yrs, if that makes sense :(.   How long have you been on Lupron?  Any bad side effects?  I'm scared since I have a very low tolerance to medicine.  I can't take anything before bed at all because it gives me god awful muscle spasms and I wake up with my fists clenching :S  and the first kind of bcp they put me on gave me really really bad chest pains, thought I was having a heart attack.   I'm just scared, I guess that's most of it also.  Scared I'll never have the child I've been trying for for the last 8 yrs and scared of what may come.  

Thanks so much for the heads up about the lupron!!

[achilles2]

Also be sure if you chose Lupron to get add-back. That is a must!

[achilles2]

If you want to consider Lupron you can get some help even if insurance pays for so much here is the website:
https://www.thegetbackprogram.com/Default.aspx

It has saved me a ton of money, I have insurance but I still have to pay 20% out of pocket.
achilles2

[April_Marie]

According to my booklet on Lupron, it basically cuts off estrogen (which fuels endo in the first place) and it will minimize lesions and pain. But we'll see. I won't get it until after my surgery. I'm not optimistic.

[Des_a_rae]

Geeze, why can't they just do what we want?  I know it's their job as a dr. to do what they've been taught but WE know what WE'RE going through, not them. :(   My surgery was doen with the new robot stuff..I'm not familiar with the "old way" but even with the robot way mine still started hurting again after 5 months.  I honestly don't think they took enough time to look around and get everything.  I was referred to a fertility clinic so he could "preserve" my fertility, BLAH!  I think I have more in there that they did not see, plus what's grown back.  I have problems peeing..I feel like I could pee a gallon and just about pee all over myself when I get in there but not even 2 teaspoons come out.  I don't have a bladder or kidney infection either.  Sometimes when I have a bowel movement (sorry TMI)  I absolutely can not! It hurts soo bad I cry and just give up.  My NEW dr. is the one telling me to figure out if I want to conceive or not.I just want to know why they can't HELP me and still ttc at the same time?  It shouldn't be that hard.   I have cyst as well. I was on birth control for over a year before my first surgery and I was STILL  having cyst while on them.  I'm sure that's part of my pain now.  

What about the lupron?  I've heard bad things about this. :(  I've been reading alot here lately because after DH's SA, of course I'm thinking the worse, trying to read what my option might be OTHER than hysterectomy(I just don't see them giving me one either). I know everyone respondes differently to medicine and Lupron being something they try but everything I've read is bad. My aunt is the only one that understands what I'm going through.  She had a completely hysterectomy at 29 because of her endo.  She had to find a "butcher" as she calls him to do it though because of the whole "what if you want to have kids one day" thing.  My aunt is gay and reassured all these dr.'s that she'd NEVER want to have a child but they still refused.  Luckily she found a dr. and they did it.  She's been pain free ever since.  I'm not saying a hysterectomy is the best thing, but it would be nice to have that option just in case..instead of just being flat out denied.  
I started yesterday and probably in the same boat as you.  Laying around in bed, really wished I could go to sleep but hurting so bad I can't get comfortable.  I hope you feel better soon!!  Please keep us posted about your surgery!!  Take care!

[April_Marie]

Thank you for your responses. I'm blessed to know that I'm not alone in my journey. I went to the doctor with guns drawn ready to say "Let's pull out all of the plumbing. I'm sick of this." To my (not so) surprise (he's a very sweet man), he was very compassionate and said "come on, let's do an ultrasound and find out if there's a cyst or mass" so, off I went to the ultrasound which was luckily in the same building. I watched her as she did the ultrasound. She paused on one and typed in "free fluid". I knew something was up then. I was taken back to my room after that. He came in at about 5:30 (my appointment was at 2:30 but I was a work-in) and said "Okay, here's what's going on and here are our options". Again, to my surprise, he actually DID put hysterectomy on the list of things. But it was teeny tiny at the very bottom of the list. He explained that I had a 2mm cyst as well as one that had already ruptured. Take that, along with the endometriosis, and you have the amount of pain I was in. He told me that it is very very possible that the endo had come back. And the cysts weren't helping. We are scheduled for a robotic laser surgery next Friday. He said that this scope is a bit more aggressive and along with it, I will start on the Lupron treatment. The medicine is over 700 dollars but I pray that my insurance covers a lot. He emphatically told me that if this surgery and treatment don't work or doesn't at least halfway calm things down, that he won't operate on me anymore. Which, I guess means, if I don't get better after this, I have to find a new OBGYN willing to do a hysterectomy. Because I told him emphatically (after he told me emphatically) that if this DIDN'T work, that I WILL demand a hysterectomy. So, make a long story short, I will go in for pre-op on the 12th and the surgery itself will be on the 14th. I was given another 25 Lorcet plus during my visit and I'm assuming he wants me to make them last. If this pain continues like it is now, I can't make that promise. But when I go in my pre-op on the 12th, if I run out, it won't hurt to ask for just a couple to get me through the next couple of days until the surgery itself. Anyway, that's the update as of now. I'll keep y'all posted. I'm in bed today. I can barely move.

[Des_a_rae]

Hi there, I'm  with you all the way about being at my wits end.  I'm sick of this.  

I've had one surgery where they removed endo and also had to have a hysteroscopy to remove a polyp in the middle of my uterus ( I was having ALOT of midcycle bleeding) and that was 2 yrs ago.  I have god awful periods.  I'm trying to keep this as short as possible lol.  
First it was my lower stomach hurting all the time, then my lower back, and now it radiates down from my hips to my thighs. After my surgery I felt fantastic for about 5 months, then the pain slowly started coming back a little every month until now I can't deal with it anymore.  I throw up and pass out from hurting so bad.  Before my surgery I could take tylenol or Ibuprofren, then it went from taking 2 to taking 6 and that not helping. I would tell the dr. how bad I would hurt and the ONLY thing they wrote me out was Ibu's 800.  Hello!!!  the pain makes me throw up and pass out and you think the 800 is going to help???   Then I would take a half of a pain pill (hydrocodone or something like that ) and I have a very low tolerance to medicine so it would knock me out but that is the ONLY way I can deal with it.  I can tell when I'm about to start because I'll hurt a solid week up until the day i do start, then I'm in bed for 3 or 4 solid days.  I need a steady job, no one is going to hire me when I can't even come to work for 6 days out of the month :S.    SO, my DH and I have been married for 13 yrs and been trying to conceive for 8 of those.  Before we wasn't technically trying, but wasn't preventing as well.  SO after all my ordeal, the dr.'s seem to think I CAN conceive and now we think it's my husband.  My dr. told me to make up my mind, conceive or not and we'll go from there.  He doesn't want to do another surgery due to scar tissue???  UGH!!!   So I told hubby that we'd get him in and get his sample done and go from there.  IF his boys are so bad that it would require surgery to fix, then I'd just rather get something done about myself.  Surgery on his boys is no guarantee and I'd rather not go through all of that. I have insurance, but it covers NOTHING for fertility(of course).  Anyways, sorry for rambling but like Hope said...You're not alone and I'm more than willing to listen or be a friend if you ever need one. :)   My family are all fertile myrtles and my mom says "gosh I never knew when i was going to start, I never had cramps or anything"  I just tell her to stop bragging lol.  They truely don't understand but at least I've found people here that do.  :)   Hope you get some relief soon!!

Also, just wondering how your appointment went???  Take care!! :)

[hopeitworks]

Hey There. I just want you to know you are not alone in anyway. I was in the same situation. I have had 4 surgeries since 2008. I started off with ibuprophen 800, moved to vicodin dindt work, then t3 then percocets, then dilaudid.None of this helped me. I was taking them 1/2 hr before I was due to technically take them again. They would just barely take the edge off. My goal was to have a baby I was able to concieve after 2 ivf cycles. I have to say if the 2nd didnt take I was getting a hysterectomy. I feel your pain and truly understand. I am 7months post delivery and my cycles returned at 3 months. I have to say. I feel fabulous. The last 2 cycles I have noticed things maybe gearing up again, but I can still take just regular ibuprohpen and function. I am also nursing my DD so this may help keep my horomones were they are needed. My pregnancy was the best ever. I felt wonderful. So after all this rambling I wanted you to know. I am here if you want to talk and I do understand