New here and would like some help!

Endometriosis
#1

hi i have endometriosis, i was diagnosed at seventeen, and have had two ops since then. i am being put on a course of injections that will give me the hormones of a menopause and hrt, i was wonderin if anyone has had this done nd what to expect? . i dont know any one that suffers with endo so i dont really have anyone that understands and i would love someone to talk to

thanks, lyn x

also i’m a bit worried about my belly button after second lap. it looks odd. like its closing up. they went right thought the middle this time. is it normal for it to look like this?!

#2

Hi Lyn,

I wasn’t diagnosed until I was 40, had a partial hysterectomy at that time. The doctor left one ovary and my endo has gotten increasingly worse. Have you started the injections yet? Is it Lupron Depot? I had my first shot of Lupron last month, have the 2nd next week. I have not experienced any side effects from it at all. I did have my estrogen level checked before starting the shots though and found that it’s very high. So I am only taking pregesterone add-back and not estrogen. I am guessing that because my estrogen level is so high that it’s going to take some time for the Lupron to shut it down.

I know the side effects to expect are menopause symptoms, since the Lupron is working to suppress your hormones. I know that everyone is different and the add-back therapy that works for one woman might not work for the next and this is something you have to work out with your doctor.

I started taking calcium supplements a month before starting the shots, because like menopause, Lupron does take out the calcium from your body. My doctor told me no less than 1200 mg of supplements a day so I take 2200 just in supplements daily.

There are lots of women who have been helped by Lupron and lots of women who say Lupron hurt them but then a lot of them will admit that they didn’t use the correct add back therapy and they didn’t take calcium supplements.

Still I am wondering when I will start to see menopause symptoms and it’s a little nerve wracking not knowing when.

With my endo, I usually do really well the first two weeks of the month. Once it hits around this time of the month though, it all goes downhill for about 2-3 weeks. I think that’s because this is when I would normally have my menstrual period, which I no longer have. I hate the burning and stinging but I really hate the pulling! I have a lot of bowel and bladder problems due to the stupid endo as well.

Yahoo groups - Goddesses of Endometriosis - is a good group if you’re looking for something more busier than here.

Please ask your doctor about your belly button. He should be able to tell you if it is normal or not. I’ve always had them go directly below mine, so please have your doc check it out.

Hope to talk to you soon!

Kelly

#3

Whew-I thought it was just me!

#4

hi kelly,

no i havnt started them yet, i had the coil for a while but it stopped working, the took it out two weeks ago so my cycle hasnt settled down yet, i have to wait for that before i can start apparently. i think its lupron but i’m not sure.

i havnt discussed anything with the doc yet, i am waiting for a follow up appointment. im a bit all over the place regarding doctors. i had one gyno for initial appointment a couple of months ago, another before surgery and a different one again after surgery! and he came to talk about treatment when i was still fairly out of it.

i think i’ll start taking some supplements now, and build my self up for this. i dont know what add ons ill be getting because as far as i know i havnt been tested for hormone levels or anything but i suppose all in good time.

i get very bad around the middle of the month too, i have a lot on my left overy, which i knew anyway because i always have very bad pain there. and i have some on my bowel which also causes some problems, the rest of it was successfully removed.

the thing i’m dreading the most about all this is the mood swings! i’m a witch once a month as it is, my poor boyfriend has an awful time ha ha. he has also told me to go to the doc about my belly button. the last time i had it done, it was a cut below it too, i thought it would be the same this time, but they went right in the middle.

i can imagine the waiting for the symptoms is one of the worst bits too. i hope your next shot goes well

talk to you soon

lyn x

#5

It’s my left side too. My left ovary is attached to my bowel. My right one was attached to the back of the uterus wall, so the doc didn’t have a problem getting rid of that one. But the left one is pretty bad and instead of telling me the truth, she lied to me. That was 4 yrs ago and I finally found the truth out a couple months ago. Unbelievable.

Right now I like the doctor I have, but I trust no one. I read everything I can online and make my own decisions about it all and then I discuss it all with him. So far, we seem to be in the same frame of mind when it comes to my treatment. So far, so good. I wasted too much time trusting a nurse practitioner so I highly recommend doctor jumping until you find one that makes you want to stay! LOL!

I am really sorry about your belly button. I hope that everything is ok. That does seem awfully weird that they’d go in right through the middle like that and hopefully there is a really good reason why the doctor did.

I’m not too worried about the mood swings. I like the saying “I’ll cross that bridge when I come to it”. I can’t deal with something I’m not experiencing, at least not yet! I don’t know how old you are, but I’m 44, so I figure menopause isn’t a biggie for me since I would have been there naturally pretty soon anyway. And it doesn’t last forever, so that’s always a plus. My doc told me that my menopause symptoms will be similar to if I’d gone into natural menopause. He asked me how my Mom’s symptoms were and told me I could gauge my own based on her experience. My Mom didn’t think it was all that big of a deal - whew! But she did have hot flashes, night sweats and mood swings. She used to get pretty snappy at restaurant drive thrus. ~LOL~

We can always print out business cards that read “I’m sorry for the horrible way I am acting. I’m going through menopause. Please excuse my deplorable behavior. Thank you.”

Do you get that pulling feeling? I swear there’s a little monster inside my body that pulls at my insides, it feels like the monster is in the middle of my body and he or she is pulling everything towards him or her. And then there’s the burning and stinging that comes along with it and the weird zap attacks. I get these zaps of burning, stinging pain all of a sudden in one small area (usually where that stupid ovary is).

Just wondered if I’m the only one possessed. :slight_smile:

Kelly

#6

hi kelly,

oh my god that is absolutely disgraceful. you were lied to about your own body. i cannot believe that. you poor thing! thats horrible.

there are only two gynos at hospital, i couldnt go private through insurance this time because of how soon it is since last time so i had to go public. you dont get any options that way!

i am 21 so i wasnt thinking about menopause at all. i was on provera before, which was like a pregnancy. it was ok to deal with but didnt really work very well. i cant even ask my mam what hers was like because she hasnt even started to go through it yet either!

you know those business cards sound like a really good idea. they could keep us out of a lot of trouble ha ha!

i do get that pulling feeling yea, its the strangest feeling, and the feeling sometimes that someone has stabbed me, tht really sharp sharp pain. and i also sometimes get a sharp stabbing pain kinda from my neck to between my legs. i hate that one with a passion.

its weird the way you put it, a little monster inside, cuz thats exactly what i think of it as!

you are definitely not the only one possessed.

lyn x

#7

Lyn - you break my heart, finding out you’re only 21. I am so sorry that you’re experiencing this at your age. I didn’t really have any problems until I was in my late 30’s. I hope you find a way to manage this disease in a way that keeps you pain free.

Dragonfly! No, you’re not the only one. In fact, my monster was picking on me all last night and is wide awake today!

#8

we are in the same boat.my dragon reared its head yesterday, second time in two weeks little git! but i got my first injection today so hopefully that will sort it out. doctor said there is a very small failure rate and i should be fine for five years, maybe more, but they said that about the coil too! i hope this does work cuz i’m so fed up of all this, and i dont want to have to go through this every five years.

it was quite funny at the docs today, while he was makin up the injection, i took of my jacket, rolled up my sleeve and held out my arm, he looked at me, laughed and said "guess again!"
the embarrassment!

oh yea, the doctor said my belly button is normal too, new skin is pushing old skin up so thats why it looks like its closing up. phew!

hey have you ever experienced fainting at that time of the month?

#9

I’ve never fainted! That’s horrible! I never even had a problem with my periods - they were just there, then they were gone - until I was in my late 30’s and even then the “problem” was just cramps! It wasn’t until I was around 37 that I started getting really bad ovarian cysts. That’s what led me to having a lap and then my hysterectomy.

I am glad to hear your belly button is doing just fine! :slight_smile:

I had my Lupron shot in the upper arm…I hope they continue giving me the shot in this location! LOL

I don’t know about the failure rate, but I do know that I’ve read comments from several women online who state that Lupron “didn’t work” for them so after 3 months they stopped getting the injection. I don’t think 3 months is enough time to find out whether an injection is going to work or not, since I think it would take time for the Lupron to shut your hormones down. I don’t know.

If this post comes off as a blubbering idiot, keep in mind I’ve been feeding my monster vicodin for the past 3 days now. I like how you called yours a dragon! I wish I would have thought of that, dragons are so much more cooler! OH! And with the Lupron, you can slay the dragon! Darn it! That’s awesome that you’ve thought of such a cool name!

Ok…going to log off now since you’re probably laughing hysterically at me. If it were me, I would. :slight_smile:

#10

i used to faint every time my dragon came out to play! it hasnt happened in a while till this weekend. i didnt faint but i felt very close to doing so. i was in work yesterday and i felt the same and very sick. i dont know if it was to do with the dragon or the injection though.

you poor thing, you seem to have an awful time of it. but at least you didnt have it all the time when you were my age. i dont really go out with my friends anymore, because when i get stressed, i start getting cramps or when i start having fun, my dragon puts a stop to it. basically i never know when its gonna start and i dont want to ruin their nights out by bein all sick and grumpy. i know they wouldnt mind and they’d understand but id feel guilty for bein a pain in the ass!

plus when i have a few drinks it starts the cramps off too, the last time i got drunk was about four months ago at a going away party for my boyfriends cousin. she was going to australia and her mam sat down with a litre bottle of shots and we darnk that and half another one. i suffered in the morning!

lucky you! i wish it was my upper arm! all i can say is im glad i wasnt wearing a thong lol! no three months isnt enough time for it to work i dont think. and its going to be shorter or longer depending on the person, so you never know. no even if i dont see any difference at first i’ll keep going with it!

ah the dragon, i love dragons, i have about a dozen big statues of them and about a dozen small ones. howie had to buy me a shelf to display them on! i actually hadnt thought of the slaying it with the shot thing! well done!

i am laughing at you but in a good way. you’ve cheered me up no end! had a bad night last night, about 6am when i got to sleep and i have to go bring my cat to the vet now. between me my cat and our kitten, poor howie always has some one to look after!