Lupron Shots?? Need advice.

[JenAZ07]

I am currently still in the dx part of things and it seems like every time I go to the dr they come up with a new theory on what is causing this severe pelvic pain.

Brief history….delivered son in June 2007 after just 22.5 weeks gestation (he had lethal chromosome abnormality and I was starting signs of pre-eclampsia so the drs convinced us to be induced early). I suffered a massive hemorrhage and the placenta has to be manually retrieved. This was the start of my problems. In Sept of 2007 I started to see a new Ob/Gyn (the Ob who delivered my son was a high risk Ob and didn’t treat gyn related issues and the first Ob/Gyn I had told me nothing was wrong with me). She (call her Ob/Gyn #3) started me on a 3 week course of antibiotics and when that didn’t work she did a dx laparoscopy to see if I had endo, etc. During the surgery she removed 2 large cysts one on each ovary and this didn’t take the pain away. She told me I didn’t have endo. So she passed me off to a GI doc who did several tests including a colonoscopy w/biopsy which all came back negative. Went back to Ob/Gyn #3 she sent me to a uro. Uro did PST (delayed reaction), in-office cysto and cysto w/hydro and biopsy. Nothing conclusive for IC, but have some food sensitivities/frequency/urgency. Started me on Elmiron and anti-histamines. Went to see a pelvic pain specialist….who says that he thinks I have PFD, pelvic congestion and/or Asherman’s Syndrome (scar tissue in the uterus) and not IC. Ob/Gyn #3 previously told me I couldn’t have Ashermans as it wouldn’t cause this much pain—pelvic pain specialist says it could if the cervix is closed and the uterus has to continue to contract trying to push things out, and says pelvic congestion is hard to dx and Ob/Gyn #3 wouldn’t have seen pelvic congestion during lap b/c gyn surgeries are done at angle and the blood dissipates when you are not upright. Also not having regular periods – just light spotting – and haven’t ovulated in months.

Yesterday I go back to Ob/Gyn #3 for unrelated issue and tell her what pelvic pain specialist says. She disagrees with all and says they are incredibly rare and thus she doesn’t think that is it. (Son’s chromosome issue was incredibly rare….so hearing rare means nothing to me—I tell her this). Anyways…..now she is 100% convinced that it is endo even though she told me months ago that it wasn’t. She says my options are 1) get pg which she says they will start me on fertility treatments (Clomid) to induce ovulation, or 2) get Lupron shots to make myself go into menopause. I am so confused. I don’t even know if she is right and I am scared that she is essentially wanting to dx me by me getting pg and seeing if the pain goes away or doing this shot to see if it goes away. And if it isn’t endo…..then I will be pg and not able to control/treat my pain/symptoms.

I know some of you have had the Lupron shots……what did your dr tell you about them? Did they tell you to get pg or have the shot? Did they tell you how long this medicine would take to get out of your system? My hubby and I are really skeptical and are thinking about switching Obs since she doesn’t seem to be making any sense, but I am really scared of doing something that will prevent me from being able to get pg in the near future. Then again…..I am desperate to get out of pain. Oh and Ob/Gyn #3 says my lack of ovulation is throwing me into perimenopause (at 29!!!)—but if this were true wouldn’t this reduce my pain if I had endo?

Sorry this is so long….but any advice suggestions would be appreciated. :pray: I am soooo tired of seeing dr after dr. I seems I have at least one, sometimes 2 drs appt every week and everyone (myself, my family and my boss) is starting to get frustrated.

[GriffsMommy]

I am currently getting the monthly Lupron injections. I actually have my fourth and last one next Thursday.

I do have confirmed endo though from a mass being removed and biopsied. I have heard that some of the most painful endo can be microscopic and might not be seen during a lap.

I would do some research on endo to see if you think this could be a possibility. If you don't like gyn #3's suggestions and answers then it makes sense to go and see another dr.

Lupron is some pretty serious stuff and I don't know if I ever would have let a dr do it that I didn't completely trust. For me my dr gave me the one month injections incase the side effects were really bad then you are only stuck with them for a month. I have some hot flashes and headaches and stuff and right after I get the injection I am usually neauseas for a couple of days. I take hormone replacment that is known back as add back therapy so that the side effects aren't as bad but you still get the benefits of the Lupron.

Personally for me it hasn't made my pain any better but since I have confirmed endo and confirmed IC my dr suggested a hysto for me which is actually scheduled for the first week in April. I have done the four months of Lupron due to the fact that the dr's have no idea how much endo is in there since I haven't had a lap since '05. I wanted to do the Lupron for a few months before the hysto so that it could shrink back whatever might be in there which will make the hysto much easier.

Whatever you decide do a lot of research about endo and about Lupron and if you don't feel comfortable with the dr then I would go get another opinion. Good luck to you whatever you decide.

[zanne]

I did 6 mos Lupron injections and my last shot was Feb 5. The shots helped me tremendously with pain and also has shrunk my endo. I go back in April to see the Doc to see if it has completely shrunk. In January it had shrunk in half. Lupron does take at least 3 mos before you start noticing a change in pain or the size of the endo. My Doc just told me to give it time to work and I did and it help me tremendously. I do have hot flashes, migraines occassionly and I get very irratable for a few weeks after my injection.

I am glad I gave it time to work, it does take the full 6 mos for it to work. Just make sure you are seeing a Doc you have a lot of trust in. My Doc is a Gyne Oncologist Surgeon and he told me he would like to avoid surgery on me if at all possible so he really wanted me to continue the Lupron shots for the 6 mos to see if they work and for me they did. I know everyone is different and has a different outcome with Lupron and Lupron doesn't always work for each person.

If you have faith and trust in your Doc listen to what he/she says. I love my Doctor and I trust him. I go back to see him in April, and I hope it has shrunk completely.

Good Luck with whatever you choose.
Sue

[Dolphjoy]

Hi..

I've had Lupron Shots on and off for the past few years. I was first given Lupron shots b/c of pain with periods....didn't know I had IC then. They helped. My doc would only let me have it for 6 months at a time and then I had to take a break for a 1/2 a year.

I'd switch from Lupron Shots and birth control pills to try to control my bleeding and my pain.

The lupron shots helped my pain...I could tell when they wore off. I had both the monthly shots as well as shots that I rec'd every few months.

I did get hot flashes from the lupron shots at times...was controlled by adding hormones...however, I got used to them and I enjoyed not having to worry about bleeding or pain for a few months...

It's an individual basis...feel free to ask more questions if I can help in any way.

Thanks
Stephanie

[saptree]

JenAZ07,
Your story sounds just like mine. Here's the deal... If you had laproscopy and they did not see endo then, you do not have endo now. You most likely do not need the Lupron shots. I say this from experience. I didn't go through the prego thing first, but did have pelvic pain. I had laproscopy surgery- no endometrosis. Ok. So that gyn sent me to a GI dr, had a CT, gastroscopy, colonscopy, small bowel x-ray and ultrasound. Nothing. He said to go back to the gyn. So I went back. He said I could have invisible endo and for this I should take Lupron shots. I didn't believe him. So I found a primary care doc, since I didn't have one, told him my story and asked his opinion. Meanwhile I opted for a new bcp, since I was already on bcps while this was going on. The primary care dr said I should do what my GYN says. So I went back to the gyn and had a three month Lupron shot. It was summertime and here I am, 24 yrs old, sitting in front of the A/C because I'm having hot flashes. Anyhow, turns out my problem was IC after all, didn't know about IC until someone at my workplace brought it to my attencion.
OK, I ended up on 9 mos of Lupron and I didn't even need it. After the second 3 month shot, I freaked out and decided to get a second opinion, another gyn, recommended by a coworker. Went there, he really disn't listen to me and said I needed a full year of Lupron to get rid of the endo. I kept telling him I didn't have endo. At that point I opted for monthly shots. I arranged for the shots to be given close to my home, by my primary care dr's office. Got one shot by the dr himself, he seemed unconcerned. Got the next month shot by the nurse practitioner at the office. She said she had personally experienced the Lupron hell, said I wasn't suppose to have more than six months and she was concerned about my bone density. So the next time I saw this gyn I mentioned the bone density thing and he got all snotty and pissy with me and said he would check it now in his office if I wanted. I said yes. The tech that gave the test started making strange faces at the results and asked if I was taking calcium. I said yes, she said I should continue, and the dr would be calling me. So a week later a nurse called from the office and said I needed to take Fosamax because my density was low in the spine and the hips. Ostiopenia. I should make this story shorter. I had a big fight with this dr and eventually parted ways, one- when I was told about IC from a person at work, and two, I took a new job and moved from the area.
Anyhow, I understand your fustration. I will say that the Lupron did not affect my fertility, I have two children, in fact a 6 month old on my lap now while I type. But I do continue to have low bone density. I had my eye sight get very poor after Lupron, had to get a much stronger prescription for glasses/contacts. There are many bad side effects. My whole point is that laproscopy is used to detect endo, and if it wasn't seen, then you don't have it. There is no such thing as invisible endo. Now, I did have PCOS, detected by the GYN I saw after my move. But if your pain is not IC, then I don't have a clue what it could be. I would seek the advice of someone else. Seems as though a CT scan would help rule out something.
I understand your fustrations with familly and bosses. I have had so many dr appns lately, then the kids get sick and they have appointments. I went through the MRSA thing and had 9 appns before it all cleared up. Just had a sigmoscopy (shorter version of colonscopy) to find out I have an anal fissure. And I have had the all over body aches off and on since mid Jan. I don't want to go to the dr again, but I am starting to freak out about it. Its like I never work. I don't think I have put in a 40 hr work week since Jun 07. I sure hope you get some answers soon. e-mail or PM me if you want to know more about my story and the drugs I have been on, or just want to talk.
sherryj@charter.net

Sherry :pray:

[mlzippy7]

Hi Jen
I have seen several endometriosis specialist throughout the US. I have a severe case so that is why I keep going to the top endo doctors. I did the Lupron shots and can go on and on about endo so if you want to email me at mlzippy7@yahoo.com I can explain more to you if you would like.
I understand about seeing several doctors every week. It has been years that I have been doing this.
Take care

[Dolphjoy]

Hi guys..

So you're saying that my pain for which I took Lupron for might have had nothing to do with what Lupron is used for? How do I go get this checked out?

I, too am feeling the pull from work. I've got dr.'s appointments almost several times a week and am running out of sick leave...

My co-workers think I must live at the doctor's!

Stephanie

[mlzippy7]

Hi Stephanie,
Did you take Lupron for endometriosis? There is a good website that explains Lupron. Feel free to email me and I would be glad to help you.

[JenAZ07]

Sorry it has taken me so long to respond….I just got really depressed, sad and stressed after my last dr appt (and her telling me it was all in my head) that I needed to take a little break and get my head in a better place. That and I have been slammed at work lately.


Christine, Sue, Stephanie, mlzippy7- thank you for sharing your experiences.

Sherry, Stephanie –So sorry you are going through this as well. (((((((hugs))))))))


Yep Dr didn’t see any endo when she was in there and the pelvic pain specialist I am seeing (who also specializes in the treatment of endo) didn’t mention it either. So I really just question the dx. I think it sounds more like a guessing game with her. I mean…..if she says I am perimenopausal since I haven’t ovulated since my son was born, nine months ago (and he passed away, so I am not breast feeding) how can it be getting worse if it is endo? I would think that the closer you get to menopause the better off endo would get. Isn’t that logical? But I am getting worse. I have read the symptoms for endo and don’t think they make sense at all. I have almost non-existent periods (probably from not ovulating), my pain gets better on the 2nd day of my period instead of getting worse, etc. It just doesn’t fit.

I have decided not to do the Lupron shots as I really do not trust this dr (seems like she loves the endo dx). I called the pelvic pain specialist I am seeing after initially posting this and his nurse said that he didn’t even write that down as a possibility and from my symptoms it didn’t sound like that was the case. She told me that if I wanted to have kids within the next year not to take the shots. I had really hoped to get pregnant within the next 6 months – depending on how my physical therapy for PFD goes – so I am going to hold off. I am seeing a new Ob/Gyn on April 2nd and I will talk to them about this as well.

Thanks for all the support ladies. I means so much… and I know you all know exactly what I am going through….the dx process, the weekly dr appts, etc. Hope we can all stay strong. I pray we will all get better!!!

[mlzippy7]

Thanks for the update Jen. I hope your new ob/gyn appt. goes well.
Let us know how it goes!!

[lisabar36]

Hi, I was told by my GYN that you can also have endo inside your uterus. They can't visually see that. I would do alot of research on the Lupron, I got 2 injections and I did feel a little better as far as my pelvic pain but I was so sick from the shots, I could not eat for days and I had a pounding headache and I was so nauseous and it lasted the entire month. The second shot is when the side effects really started, I was so sick from the shot and weak from not being able to eat, I had to force myself to eat and my head hurt so bad I could not sleep but I am in no way trying to scare you and just think you should do extensive research. I was one of the ones the company did not recomend me get any more shots because of weight loss and headaches. You may react totally different and be fine, I would just thoroughly research it because that was something I did not do. An then you are more prepared if you decide to try it and you know what could happen and you may do great, its all really trial and error until you see if it works and you do ok. :)