Doctor appt today

Mel2626

So today I have my first consult with a local ob/gyn dr who also specializes in treating endo!! I still haven't gotten a diagnosis after all these years of suffering~ going on about 5 years of suspected endo~ so hoping they'll have better input since they're more familiar than other doctors I've seen. I must say that this month, my TOM was a lot less painful than other months so that was a very pleasant and unexpected surprise. Of course I still have extra pain (in addition to the regular TOM pain) but nothing like it has been. I'm just trying to remain hopeful that these doctors will listen to me and I'll get some good feedback. I don't care how many tests they need to run, I just need something to tell me I'm not crazy! lol I'll keep everyone up to date.
btw~ Thanks for this group!!!!

Angelbinick21

I cried (with joy) after leaving my first appointment with an official diagnosis. For years and years people told me I was just being a baby, or being ridiculous, or just exaggerating the pain and other symptoms. The doctor told me that he didn't know how I was able to function as a normal person in daily life! I felt so relieved and so validated! I hope you find this to be true, too.

Mel2626

Dr appt went well. He's fairly certain that I do have endometriosis based on my past and current symptoms. Since I've already had a lapro surgery done a few years ago and a colonoscopy last year where no endo-cells were found (though who knows if those surgeons were fully knowledgeable of endo and all the different appearances it can take), we decided to do a test as opposed to another surgery at this point. I'm going to have a pelvic ultrasound (and yet another vaginal one if needed) done. We're going to go ahead with one month of Lupron to sort of "test" if it has any effect on my symptoms and then go from there. He explained what to expect during the different phases over the month that I'll be on the Lupron (I believe it will be via injection) and then we'll go deeper into treatment options once we establish whether or not the Lupron helped. He also mentioned that it's possible I have Adenomyosis (basically having endo in the middle layers of the uterus and not on the surface) since no growths were noticed on my surface tissue during my other procedures.

I thought I'd feel some relief but I had the opposite reaction last night. Kind of feeling a little defeated but I think it's just because I'm trying to accept that if I DO have this, it's for life. I think that aspect freaked me out a bit. For now I'm researching and learning different ways to cope with the pain. I try to avoid taking pain meds as much as possible but I need to understand that it's okay to take them if I'm struggling. I'm going to send out an e-mail to my family today to sort of fill them in as to what's going on. My family is very supportive and I like to be open about medical issues (I think we all should) instead of being ashamed so I know they'll be understanding.

I don't know when I'll be getting the shot yet because the dr said it's fairly pricey and they have to run it by the insurance company first to see how much they'll cover etc. Of course, we are switching insurance companies at my job next week so there's going to be a delay in getting an answer from anyone but at least I know that the wheels are set in motion.

Thanks for letting me vent!!

Angelbinick21

Congratulations on getting through your appointment! Those vaginal ultrasounds are icky, aren't they? It can be so nerve wracking.

I just finished 6 months of Lupron injections. Two things - it absolutely stops the pain and bleeding, but I had weight gain, hot flashes, and mood swings. (It's basically like a medically induced menopause.)

Best of luck, I hope your shots are covered and they provide you some relief. You are lucky to have a supportive family

bethfartman

I'm surprised they are going to put you on Lupron without an official diagnosis, it's such a serious drug. I have confirmed endo and I still don't want it- I'd rather deal with the severe pain I've been in for the last 15 years then deal with all new symptoms of going through menopause (bone density loss, hot flashes, mood swings, weight gain, muscle loss, etc.) and you can't be on it for very long anyways (I want to say 6 months tops) so the pain will just be back when you're done with the course. Any specialist I've seen said they want to put me on Lupron and then do another surgery to get out any adhesions that were not shrunk due to the lack of estrogen during the Lupron course, but not to do it until I want to get pregnant to free up my tubes and lone ovary since it's only a temporary solution. I'd look into it before you start it.

Angelbinick21

You are absolutely correct - it's a serious drug with serious side effects. I did it for 6 months and that's the longest you should ever take it. If it weren't for some serious internal damage from all the endo scar tissue and lesions I would not have agreed to take it. Lots of side effects. Being off the injections for just 6 weeks now, I can say that my symptoms have not returned, and the doctor expects me to get another 6-12 months of relief. It's just something every woman has to weigh the risks and decide for herself.

phoenixoncemore

Thanks for this. My first specialist appt is next week, so it's nice to have a sort of guide for what could happen.

I haven't had a lap before though, and I think that's what I'm going to try and aim for. As much as the idea of surgery freaks me out, I know from experience my body does not agree with its hormones being tampered with. If there's a side effect I'll get it for sure.

I know what you mean about the relief. I cried in my car when I had the dreaded ultrasound and was told I was completely normal. And when a locum doctor told me to either take evening primrose oil and man-up or get pregnant. But when my doc gave me a 'tentative diagnosis' of endo I could have kissed him for taking me seriously! You are not alone in that by the sound of things and you're definately not crazy.

I glad you are getting things sorted and they are taking you seriously. Hope you find something that works for you.

Mel2626

Hi Ladies!! So sorry for not responding I just saw all of these!!

I had a follow-up appt today to go over my ultrasound results. My left side that's been driving me crazy is where I have a decent sized cyst~ almost 7cm across (holy crap). He's fairly certain it's an endometroid and he went over all the options and risks for each. I love that he gives me all the background on each step including the worst case scenario. We then talk about it until I make a decision. He told me I didn't need to make one today but I decided to go ahead with the one month of Lupron and see what, if any, effect the Lupron has on the cyst but more importantly my other symptoms. More than likely I'll have the cyst surgically removed (lapro again) anyway so I'd like to see how my body responds to the Lupron first and then go from there.

I know that endometroids can spread or relocate after surgery (and almost positive that's what happened after my first lapro) so I feel better putting off the surgery for a bit. I should be getting the shot tomorrow and then my follow-up is in 6 weeks after the medicine has run its course. Not exactly looking forward to the menopausal symptoms but having done the lapro before and knowing that surgery won't cure it either (or in my case, cause new symptoms), I'm confident in my decision. My co-pay for the Lurpon is only $10 so that surely helped as well! lol I'll definitely be back to let you know how it goes and hoping to have some positive results! Fingers crossed!!!

Thanks for everyone's concern and support. Hope you all have a great pain-free day!!

Mel2626

Hi cysters!!
Just wanted to follow up again with my progress with the one month Lupron shot. Today is 3 weeks after I got my injection and I'm still waiting for the relief... I still had a normal TOM last week and definitely have the increased pain the doctors warn MAY happen. Well, it definitely got worse~ no MAY about it. I've had a few bouts where I don't think the cyst(s) actually burst but I was in agonizing pain to the point where I was tender for the next few days. Funny how I'm getting to know the different types of pain when they strike.

For the past week I've also had a few of the "normal" Lupron side effects like hot flashes, irritability etc. I also attempted a 5k on 8/3 but was getting very winded and was unable to catch my breath for a majority of the race. Luckily there were lots of fun obstacles so it helped a bit but when I got home I had a huge headache and the "loss of breath" lasted on and off until Monday. I called my dr and they advised to go to the er to get checked out in case of a lung clot (yikes) and they ran an ekg, bloodwork and chest x-ray and thankfully everything came back okay AND I was finally starting to catch my breath while in the waiting room. So still unsure what caused the loss of breath ad also unsure if it was due to the shot I had a week and a half before that.

That leads me to this week. Like I said my TOM came and went just like normal. I'm still having A LOT of pain~ it's definitely increased since getting the shot and now it feels like I have a large cyst on my right side in addition to the one I know about on my left side. I even think it may be affecting my bladder now since I'll have the sense of urgency but will have to sit and wait for a bit for the urine to actually pass and it is painful in my uterine/ovarian areas when I do so~ a very different feeling from a UTI though. Plus I have a pain now going up my right side from my shoulder down to my pelvis that I'm guessing must be from the new cyst as well. Good times I tell ya!

So that's my Lupron experience in a nutshell. I have a follow-up with the dr next week on the 22nd and I'll not continue on the Lupron since this is just way too painful to deal with and I'll be scheduling another surgery instead. Not ideal but I knew it had to be done again eventually anyway so I'll find out more next Thursday.

Hope everyone's doing okay!!

Skinny625

I had stage 4 severe endometriosis and I suffered for several years which it just got worst. It can take a real toll on your health. I had several lap procedures and always came back fast into my system especially the large cysts. It gets your internal organs so tangled up and sometimes gets inside your organs. I also was on Lupron for several months and it does take a toll on your emotions especially very irritable. I am a very nice person but when I was on Lupron after the third month my boss pulled me aside and said I was being a real B*t*h. I then contacted my doctor and told him I needed to be off the Lupron. Lupron didn't help me much.
But I have to say after many years of being very uncomfortable and I am not at peace and pain free. I had to have a total hysterectomy done. When they did it they and to call a general surgeon in to help with the surgery because my colon was so mangled they had to straighten it out from all the endometriosis and adhesion that were bad. After having this surgery I never realized how much it took over my life. If you would like more information about Endometriosis there is a great website called Endo-Resolved that has a lot of useful info on it.
The best of luck to everybody :flowerforyou: