A Severe "Episode" hits

[Emily1]

Im going to take you through a walk on the severe endometriosis side. This happened last month. I normally have these every month to every other month. Many of women who have had endo diagnosed will recognize this.

I wake up, in the middle of my lower pelvis is a great deal of pain, like a hot drill through the middle of my body. I know what this is, Ive felt is before, and thanks to not having eaten anything the night before I could not take my ibuprofen to calm it down. Ive made a big mistake, I didnt take the ibuprofen which might save me from an acute "episode".

My sisters on her way to my house, the day before my car wouldnt start and I couldnt get to the store to get food etc before the dreaded 2nd day of my period. So here it is as I awake, the 2nd day. The 2nd day is always the worst for me, the most dangerous and the start of the worst pain.

I get up try to tidy a few things up knowing my sister is coming. I had been looking forward to her visit since I dont get to see her often, looking forward to chatting with her in the car as we drive to and from the store.

Almost right away I am walking bent over, I take a vicodin and hope the pain will subside soon. I ignore the inevtiable as if it wont come. I let the dogs out, feed the cats. I grab the vacumm cleaner and bring it into my room, I sit down on the bed the pain getting to be too much. Im doubled over now realizing I will not be able to stand up again.

"Damn it" I think, knowing Ive managed to stave off this horrible nightmare for two months, I was hoping to make it three. "I shouldnt have gotten out of bed what was I thinking!"

Here it comes- the internal bleeding, Ive done it now, Ive torn one..... An endo spot was trying to tell me "you best not move" but I had been moving anyways thinking it wont happen and that the pain will subside. "oh I hope my sister gets here soon" I think as I lay down into the fetal position. You see, once youre down you can not move again, you may flop around a bit if possible just to quell the pain but mostly you try not to move, as ANY movement only makes you feel sicker as the pain throbs more.

I start feeling sick to my stomach, the pain is so intense now I begin to beg god to make it stop. I have fast acting morphine right over there but I cant even bring myself to turn over to get it. I put it on the wrong side of the bed to where I ended up and by the time I knew I would have to take it, it was too late. My breathing increases, im breathing hard deep and fast. As if somehow the deep breathing helps, Im even yawning.

"please let her get here soon"

My sister arrives, shes outside and the dog is all over her, shes calling my name wondering why I am not coming out. I try to yell her name but its too painful. She comes in and finds me on my bed, I try to explain whats happening, I ask her if she brought any food. She has a lifesaving banana oh thank the gods! I have her gather my meds, promethazine (anti nausea), banana and ibuprofen, morphine fast acting, down they go while I am still lying in the fetal position. I have to have her take them out of the bottle for me and as I try to take one from her hand, my hand is so intensely shaking I can hardly grasp anything.

Of course I know I cant go anywhere, I cant even sit up. She makes a list and off to the store she goes, by herself. Unlike past incidences within the hour the pain has subsided but still threatens. "I must have this down pretty well now" I think, since normally I am in intense suffering for hours. This is the first time Ive used the fast acting morphine for it, it helped a lot.

By the time my sister gets back I am up on my feet although very careful and moving slowly. She is amazed I am up. I almost fell into a nice sleep but since I knew she would return with many groceries I struggled to get up and moving again.

This is a typical acute endo "episode" for me. Except normally I am alone.

[asdkjneuv]

Halfway through reading this I started to tear up a little bit. I know exactly what you're talking about and I've felt the exact same things every month for the last five years of my perioding (like how I made up a word? haha). I don't know many people with endometriosis and trying to talk to other girls about it sucks because they're like, "I've had painful periods before." I recently read in a book that the uterine contractions in a woman with endometriosis can equal that of a woman giving birth to a full-term fetus.

I'm here for ya!

[Deedeelyn]

I lived with the pain for sixteen years ,nothing helped me as far as medication but I always tried the ibuprofen but it never helped. I used to have the pain in between periods so there seemed to be no end. My sister also has a severe case , even causing infertility. I can truly relate to the intense and debilitating pain that endo causes. I hope you find your way of coping.
Deedeelyn

[gakat2]

I went through the severe pain and bleeding for many years. In November, I ended up having a hysterectomy due to pre-cancer -- fibroids and endo was my diagnosis also. I was so tired of the monthly cycle that had taken control of my life -- I wanted my own control back. Feeling a lot better now since the hysterectomy.

There's a procedure out there called Novasure -- don't know if you've heard of it but it may be of interest to you.

[Emily1]

:) Yay some people started to post here!

Well I just recieved my second surgery a week ago. The doctor found endometriomas on both ovaries, one was 5 cm big :(. Course they can get even bigger but 5cm is enough for me. I was surprised because I didnt think I had a problem on my ovaries. Besides I only had surgery 2 1/2 years ago, guess these buggers can crop up fast.

Looks as though these endometriomas were the ones doing the works on me, rupturing and causing internal bleeding. I managed to skate through last month on toradol injections. Thankfully I have some of the best doctors in the world and they allow me to give them to myself. Ibuprofen always helped me some but toradol injections simply kicks its ***.

For me Ive been able to think of what may help and ask the doctors for it and they are always willing to give it a try. Diluadid also has helped the period pain a lot although Im not sure how it would handle the acute pain on its own.

I think dealing with the acute episodes at home takes a combination approach- ibuprofen, something strong like morphine fast acting, diluadid, or vicodin for those who dont regularly take it, and an anti nausea that can be a little sedating.

D- the chronic pain throughout the month it seems in my experience is the adhesions mostly.
Asd- I read something similar about the endo having the chemical messengers themselves to cause contractions. Man if having a baby is anything like these episodes you can count me out lol. Im so glad I had this surgery (took me a year to find a good surgeon who takes my insurance) because endometriomas will NOT go away or get better with hormone treatment. Turns out my refusal of hormones was spot on because they wouldnt have done me a bit of good. For endometriomas you must have surgery to remove them.
Emily

[Lil E]

I've had endo since my teens, I'm 50 now. I had a hysterectomy at 32, now it seems that it has staged a re-appearence. I didn't know that was possible, I thought it was a ovarian cyst, so did my doc but a gyn said endo.

Has anyone tried Lupron? He's saying six months of this, if it doesn't get better, surgery. I already have chronic pain from my back and neck, one surgery each, now this crap. Will try to keep up on this, can't sit for long.

Hope the New Year is better for all.

[Deedeelyn]

I was on lupron for about six months. It worked great while I was on it but the pain instantly came back once I quit taking it . I finally opted to have the full surgery. I didn't think it could come back after a hysterectomy,, Geez, I hope I never have to feel that pain again.
Good luck with your program.
Happy New Year.
Deedeelyn

[Kathi49]

Emily,

I read your post and was remembering the days when I used to go through the same thing! It is horrible stuff and horrible pain. :eek: But through the years...24 years worth I ALWAYS knew when it was back. I would hit the floor in pain and have cold sweats and just be so sick.

Yes, endo can come back ESPECIALLY if you have kept your ovaries even after having the uterus removed. It can also come back even if a tiny bit is left over even IF you had everything taken out. You all can read my post about Lupron. But the thing is...I HAD to have my ovaries removed due to the endo alone. My RE said, of course, the estrogen just feeds it. So, Lupron it was, hysterectomy (everything taken) and then the Combipatch for about 3 months or so. This was in 1999 and I haven't had a return of endo.

So, then came the balancing act with ERT...another story for another time. But it is truly difficult to get the right balance.

[Parsi]

Although I had pain, nausea seemed more of a problem.

From about the age 16, the first or second day of every period was torture. Stomach cramps and nausea. More than once I could be found on the bathroom floor with my head over the toilet without the energy to raise my head. Sometimes I'd sit on the toilet for the diarrhea and a wastebasket or pail nearby for the vomiting.

Midal was the only thing I ever tried.

I was nearly 30 when I had my hysterectomy (ovaries also removed).

I'm nearly 58 now and have long since discontinued the estrogen replacement.

[Gymnast_Navy_Wife]

I have a question--- how exactly is endometriosis diagnosed ? My GYN suspects I may have this due to the re occurance of painful cysts in the past few weeks; and a history of cysts before getting birth control and I currently not on birth control. (dh and I are trying to concieve).... My GYN didn't mention this to me too much as we were trying to find the source of my abdominal/pelvic pain -- which we did (sveral cysts), lol; so any info would be appreciated. Also, what questions do I ask when I see her next ?

TIA !
Gymnast Navy Wife

[Kathi49]

Hi GNW! :)

Actually, my Reproductive Endocrinologist diagnosed it and it was through Laparoscopy. However, she could, at times, feel it (the nodules I guess) during a rectal exam. :eek: Anyway, I don't know about now because it has been such a long time. But back then she told me the only TRUE way to diagnose it is through Laparoscopy. And I do remember her telling me that the weird thing about endo is that you can have it mildly and have SEVERE pain OR you can have a ton of it without hardly any pain. In my case it was mild but the pain was severe. Gosh, and I even have SEVERAL COLOR videos of the numerous "scopes" I had LOL! Anyway, she usually lasered out. To me, the surgery is no biggie and my belly button looks like an "x" LOL! The worst part was the gas that they inflate you with. When it goes into the shoulders and until it is absorbed...THAT hurts! But after the first one, and babying myself, I learned to get up and walk around as much as I could. It seems doing that helped me to heal a lot faster and got rid of the excess gas much quicker too. All in all...I have had about 5 of these scopes through the years.

Oops and if you are trying to conceive, I would DEFINITELY get this checked out and lasered out IF you have it. It WAS part of the reason for my infertility for four years. Once it was wiped out, and after she ran a few tests, it was Clomid first and then Pergonal and then...BINGO! Anyway, mine is a long story since I was with another doctor who I swear was taking me for my money. I spent 4 years with him trying to get the infertility issues straightened out. With the newer RE I ended up seeing...I was pregnant in 3 months! So, I would have to say she knew what she was doing. :) And it is funny...life comes full circle...I had my daughter in 1984 and she was a preemie. But this absolutely wonderful RE who helped me to conceive her also did my hysterectomy in 1999. Anyway, I am rambling...sorry about that. I am just sitting here reflecting on what a wonderful doctor she was. :)

[Gymnast_Navy_Wife]

Hi Kathy--
Thanks for sharing your experience with me. I am new to the world of "female problems" . I had some issues when I was in my late teens with cysts and pelvic pain-- and had surgery to remove those; I got on birth control--- the pill when I got married at age 19 and things seemed to be smoothe sailing with just the typical mild PMS stuff right before my period. I was on birth control for 5.5 years, and when I got off it in August, it was when I started having some problems. At first it was "external" type stuff, and then pelvic pain and the subsequent discovery of the cysts. I only recently started seeing a GYN--- my pcp had handled that part of my medical care until the problems started and she wasnt able to give me any answers on anything and simply brushed things off as nothing. Thankfully, since I began seeing the GYN, I've gotten a little more explanation, things are being taken more seriously and she has been a Godsend. She did an ultrasound at my last visit, and in addition to the cysts, saw a lot of thickening in some areas. Having Pelvic pain is so frustrating especially when no one understands or can figure it out and begin to think there may be no medical "reason" behind the pain--- luckily my GYN has been able to find a source and don't feel quite so "out in left field" per say...... Anyway, back to the Endemetriosis, she mentioned that they usually treat it hormonely-- birth control pills, or other hormal intervention; or with Laproscopy.

Your information experience with the whole trying to concieve process was really helpful--- thanks for sharing. The good days and bad days and varying intensity made so much sense and your description sounds so much like what I am experiencing.

Anyway, is there any specific questions I should ask my GYN the next time I see her ?

Sorry for rambiling and asking so many questions....

:) GNW

[Kathi49]

GNW,

Okay, I am trying to remember back in time LOL! I know at one point she had me use Danazol...that was at first. It is a male hormone so to speak that kind of puts you through artificial menopause so that those implants will dry up. It wasn't too bad and I had a few SE's. But it didn't rid me of it totally. Then there is Lupron which was given to me PRIOR to my hysterectomy and to help to dry up any residual microscopic specs of endo. But I take issue with Lupron. Fair warning...you will go through some major, horrible headaches and hot flashes that will come something like every 10 minutes. I took ONE injection of that which was to last for 3 months and then I was ready for surgery....I had already gone through menopause at that point. Then after surgery it was addback therapy. But I am speaking of a hysterectomy here. The thing is though..and I CANNOT prove it...I think it contributed greatly to my osteoarthritis. I have read up on this at hystersisters.com and there have been lawsuits. It can really mess you up. I don't truly regret taking that injection but I DO wonder if it didn't cause other problems.

Sooo...because of all this. The very BEST suggestion I can make is to just have a laparoscopy done. To me and having been through the gamut, it is really the only way they can get in there, see where it is and laser it out. It is an outpatient procedure, you SHOULD only have on small incision. But one time I woke up and there were 3 LOL! But she said she had to get in with a trocar...something like that. Anyway, she would get it all out and I would feel so much better. Like I said before though, the only painful thing is the gas in the shoulders. And I believe she also put Hyscon (sp?) in there to prevent the formation of adhesions. That was a bit painful too for awhile. But in the long run...well worth it. Compared to everything else I have been through with the spinal disorders and such...the "scopes" are a piece of cake! To me anyway. :) But, if your ob/gyn wants to try some hormonal therapy first, find out what the SE's are!!! Again, Lupron is a very, very potent and serious drug. Then again, it has helped a lot of people as well. But your body WILL shut down...ovaries and all...and it is NOT pleasant. They may have newer things these days too...I just don't know...but I would ask first what she wants to try in the way of hormonal therapy.

Again, if it were me and I was wanting to try to start to conceive fairly quickly, I would go with a "scope". All this other takes some time.