Scared of Lupron, confused by (non)diagnosis, etc.

Good afternoon everyone. I'm feeling a lot like I'm on a roller coaster. And I'm not a fan of amusement park rides. I went in for my yearly on 4-24, still experiencing pain issues (constant dull pain-"drop to my knees" labor type pain, and all things in between). I have mentioned this to my doctor on numerous occasions and gotten little feedback, so this time I decided I would not be ignored. I had an app on my phone that tracked symptoms, and brought that in for her to see. It really was night and day, she perked up and listened. It was a fantastic feeling. She did an exam, nothing a very tender uterus, and ultrasound and prescribed me a 2 week course of strong antibiotics, just in case. I was told to come back after the antibiotics were gone and if they didn't help, we would schedule a hysterectomy. She tossed around adenomyosis and post ablation syndrome, but was not totally sold on either. She thought these were the most likely however, since she KNEW I did not have endo (none seen on prior lap).

Fast forward a bit. Took the antibiotics which gave me nothing but nausea and a leash tying me to my bathroom. Was supposed to go back in 5-8, but ended up back in on 5-2 with debilitating pain that would not go away. Have experienced this before, but it usually lasts a few minutes, then goes away for a few hours, days, or longer. This was continual for about 5 hours before I called. They go me in, did another U/S, gave me some pain meds and told me to come back on 5-6 if it didn't stop. Pain meds helped, but did not stop it. When I went back in, they did yet another U/S and exam--all they could find was a small cyst that had grown some since inital U/S and "looked more complex, unsure if complex area is fallopian tube". They decided they had to do emergency surgery in case I had ovarian torsion. They ended up removing both fallopian tubes and the small cyst, said fallopian tubes were inflamed and swollen. I asked the doctor in recovery what we would do if this didn't solve it, she told me to rest and we'll talk about it at post-op.

Went for post-op on 5-20. While I am still a bit sore from the surgery, I can tell that this has NOT fixed my constant pain, and after getting my period 2 days prior to the visit, my menstrual cramps are still excruciating, to the point of vomiting half the day on Sunday. This visit was a complete 180 from my initial visit though. I told her the pain was not gone, she kind of shrugged. She did an exam and told me that I could take some Advil for menstrual cramps...I started crying and told her I just wanted to find out what was wrong so we could fix it, and that I can't stand living like this anymore. She asked what I meant...I explained YET AGAIN that this is not only happening during my period, but ALL THE TIME. She told me that they couldn't find anything wrong. I asked her about her mention of adenomyosis and post-ablation syndrome, she told me it wasn't either of those. Then told me that it could be endometriosis, although I've had 2 laps and umpteen scans of various sorts and they've never found any.

Apparently the hysterectomy is off the table. I was too shocked/let down/confused to even think to ask her much of anything. She told me I could try b/c until I'm 35--which is next month...Lupron, or do nothing. When she was talking about scheduling my hysterectomy, she said we would definitely not want to take my ovaries as it would "turn you into crabby old lady!" Now she wants to give me drugs that shut down my ovaries? I am terrified of this and told her. I also mentioned that I do have some anxiety, it's not terrible and I don't take anything for it, but am afraid of it getting worse with Lupron. She told me maybe the anxiety was causing my pain...

Why is she so willing to (sort of) diagnose endometriosis with no solid evidence, but not anything else? What is Lupron like, should I be this afraid of it? Is it a good idea to try it for a short time even if it terrifies me? If it works, then what? I can't take it for more than 6 months. I just don't know what to do anymore, I'm so lost. I am going to work on a second opinion doc after the weekend, but am now afraid that it will just be a waste of time/money. Any advice appreciated, sorry (again) so long.

Much love,
Danielle

Find another doc. I had one do the same type of things to me.

I kept telling her I think i have adeno. She said I needed lupron and if it works a complete hysterectomy with BSO. I was furious.

I saw another doc who finally understood. He did my hysterectomy 1 month ago. I got the pathology today- guess what, adeno!!!

I had the labor like pains wether I was on my cycle or not. I too had an ablation it only made things worse.

There is nothing wrong with finding a doc that listens. You are not crazy! This is painful and you shouldn't have to live like this. Big big hugs!

Hello ReganCassidy,

I was diagnosed with Endo in my twenties. I experienced years of irregular and painful cycles that previous doctors said it was "normal". It wasn't until I went to my current doctor (who has been for over 20 years) who told me I was likely suffering from endometriosis. Had 3 lap surgeries for it. He decided Lupron because he didn't want to keep going inside messing with my organs because I was still young and hadn't had any children yet. Lurpron basically takes your body into a menopausal state so you will not have periods, therefore, slowing down the endo growth. I received a shot once a month in my rear end for 6 months. Because of the side effects, such as, bone lost; I believe doctors don't want to prescribe it for long periods of time; not to mention; how expensive it is for insurance companies. Birth control pills helped me for many years as it made my periods lighter and shorter and less cramping. I eventually stopped taking the pill at 35 because I was afraid of the increased side effects and also because I wanted to have children. Well, the children never came unfortunately. Fast forward 10 years later, I was diagnosed with adenomyosis during my last yearly in December. My periods have been brutal the last several years with the last 2 being horrific. I went for my yearly and my doctor said my uterus was enlarged and I probably was suffering from aden. Went to have a sonogram and he was right AGAIN. Had my hysterectomy on March 17th. Afterwards, he said I had stage 2 endo (again) on top of the adenomysis, fibroids, ovarian cysts, and a polyp. I was in so much pain the last year that I couldn't take dealing with this another 5 plus years when I would be entering menopause. The Lupron did bring menopause symptoms like night sweats, etc. but the bleeding and pain was gone for 6 months. I wish you all the best and I would certainly get another opinion. My current doctor was my second opinion who has been right on everything. I haven't looked back since.

Hi ReganCassidy, I'm 35 years old and for 23 of those years I've suffered from the severe pain caused by endometriosis.

Just because they didn't find endometriosis during previous lap, doesn't mean that the doctor didn't miss it or that you didn't develop it later on.

I was in complete shock after my first laperoscopy when they didn't find it. I cried, I was so devastated that there wasn't a name for what was causing my pain. The women on my Dad's side of the family were very unsupportive and had told me to grow up, that they all went through this every month so I just needed to suck it up. To me this diagnosis was their confirmation that I was just making up the severity of my pain.

Seven years later my endometriosis was diagnosed when I had my second lap. I hadn't been able to work because the endo that had grown was causing me severe nerve pain that left me unable to sit or walk. The doctor thought I'd lost my mind when I cried from happiness and said "Oh thank goodness" when he gave me the diagnosis. "That's not a good thing!" he said.

You have to do what's right for you, but personally I wouldn't allow a doctor to push medication like Lupron on me without a definitive diagnosis. Not to mention a hysterectomy!

IMO, you're at the point where you should be getting a second opinion. I think its really important that you seek out a doctor that specializes in endometriosis excision, someone who knows how to recognize endometriosis and who can properly remove it. Not all gynos have the knowledge or skill to treat such an invasive disease.

P.S. - I don't know if its just me, but from what you wrote I really don't like your doctor's tone. A word of advice, NEVER allow a doctor to give you the brush off or make you doubt yourself, you deserve and its your right to live a pain free life.

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Originally Posted by TooYoung79 Hi ReganCassidy, I'm 35 years old and for 23 of those years I've suffered from the severe pain caused by endometriosis. Just because they didn't find endometriosis during previous lap, doesn't mean that the doctor didn't miss it or that you didn't develop it later on. I was in complete shock after my first laperoscopy when they didn't find it. I cried, I was so devastated that there wasn't a name for what was causing my pain. The women on my Dad's side of the family were very unsupportive and had told me to grow up, that they all went through this every month so I just needed to suck it up. To me this diagnosis was their confirmation that I was just making up the severity of my pain. Seven years later my endometriosis was diagnosed when I had my second lap. I hadn't been able to work because the endo that had grown was causing me severe nerve pain that left me unable to sit or walk. The doctor thought I'd lost my mind when I cried from happiness and said "Oh thank goodness" when he gave me the diagnosis. "That's not a good thing!" he said. You have to do what's right for you, but personally I wouldn't allow a doctor to push medication like Lupron on me without a definitive diagnosis. Not to mention a hysterectomy! IMO, you're at the point where you should be getting a second opinion. I think its really important that you seek out a doctor that specializes in endometriosis excision, someone who knows how to recognize endometriosis and who can properly remove it. Not all gynos have the knowledge or skill to treat such an invasive disease. P.S. - I don't know if its just me, but from what you wrote I really don't like your doctor's tone. A word of advice, NEVER allow a doctor to give you the brush off or make you doubt yourself, you deserve and its your right to live a pain free life.

I have the same problem. No one believes that I have this much pain. I had a hysterectomy 1 year ago and I was doing fine. Now I started with the pain again. Is devastating to me knowing I still have the pain after surgery.

Hi ReganCassidy,

Your doctor does not sound sympathetic or particularly helpful, but in this case I think I may be able to explain to you why she is prescribing you Lupron. Some of this information came from my husband (doctor and pharmacist) and some from my gynaecologist.

I'm 28 and I had my first injection of Lupron a few days ago. I have no diagnosis of anything, but a long history of blindingly painful/heavy periods since pretty much day 1, a laparoscopy for endometriosis that came back clear and a complete inability to tolerate hormonal contraception or a coil (including the Mirena/IUS). If I don't tolerate Lupron well, then it was suggested that I get a full hysterectomy - ovaries and all, which is why I'm here.

As well as treatment for endometriosis, Lupron can also be used as essentially a test. By shutting down the normal function of your ovaries, it allows the doctor to determine whether the pain is due to your reproductive system rather than any other cause. If you do have endometriosis or similar condition, it will also treat your symptoms.

Having had a diagnostic laparoscopy myself and had it come back negative, I was informed that endometriosis can be microscopic and therefore impossible to see in surgery. Since pain doesn't correlate with the extent of the endometriosis then it could be floating around in there and they may never find it.

I have scientific journal access and I would be happy to dig up a few papers on the use of Lupron and other GnRH-a drugs for severe pelvic pain, if you would like? You can take them for years nowadays if they work for you, with 'add-back' therapy (i.e. low-level HRT) to prevent bone density problems. Some people find the side effects a bit much but it is a temporary and reversible drug therapy.

Thank you all so much, it is truly a blessing to have you all to talk to I have thus far had 2 laps, the first one being specifically to look for endo. Guess I'm just surprised that they could have missed it twice. No matter how horrendous they were, my periods have always been regular and I never had a problem getting pregnant. I have to say, the ablation did help with the bleeding--I now bleed considerably less, and for 4 days instead of 7-15. I do know that the ablation made the pain worse though, as it was after that when I started getting the labor-type pains randomly, whether on my period or not. I am sure that for some Lupron does work well, and the "test" makes sense. I just don't know. I have a very high incidence of heart disease in my family. I am slightly overweight. I am a migraine sufferer. Weight gain, migraines and risk of heart problems seem to be mentioned in a lot of places.

I have called 2 doctors out-of-town thus far and neither are taking new patients. I am wondering if I could go and see my GP--he delivered my first child but no longer practices gynecology. He is much more understanding. I just don't know if it would do me any good if he can't really diagnose anything. I have also not been able to find a doctor in North Dakota who specializes in endometriosis. Guess I'll keep searching, again, thank you all!

*hugs*
Danielle

It drives me crazy when doctors insinuate that your pain is in your head. I would drop her like a hot stone. It couldn't hurt to see your GP while you are looking for another GYN. I don't know about yours, but mine helps with symptom management while I am looking for a specialist. At the very least it would do you good to have a sympathetic ear and be reminded that there are good doctors out there. I hope you get some relief soon!

I think I will try my GP, maybe if nothing else he can explain the Lupron better and give me his opinion on how it would affect my migraines.

On another note, I seem to have jinxed myself--after just mentioning that I've never really had issues with irregular bleeding, I've now been bleeding for 2 days and not due for period for another 2 1/2 weeks or so. I'm not bleeding out, but definitely more than spotting, and a lot of small clots. Is this something I should be concerned with, 3 1/2 weeks after surgery? I can't call clinic on the weekend, and don't want to do ER if I don't have to. Pain is definitely up there along with it, hard cramps more frequent than the normal day to day.

Your symptoms sound an awful lot like mine and I've just been diagnosed with adenomyosis.

I've tried Mirena - cut down the bleeding to a manageable amount but just bleed every day now. Tried Zoladex (very similar to Lupron) for 5 months but it didn't stop my cycle, so didn't stop the bleeding, so didn't stop the pain. In fact, I believe the latest medical advice is that GnRH analogues aren't used to diagnose adenomyosis as they regularly fail to stop the pain.

I've had 2 laps - one to look for endo and one because they thought I had a ruptured cyst (after I stopped Zoladex I had a terrible flare-up of pain that no one could explain) but they've never found anything. In the end, my old gynae diagnosed me with IBS and virtually told me to go away and stop being a drama queen!

I did lots of online research and found a fantastic site - adenomyosis advice association - and found all the answers I was looking for. Armed with all the info I could find I booked myself a new doctor and she did, indeed, diagnose me with probable adeno based on examination, history and a transvaginal ultrasound. It's worth mentioning that my uterus is normal sized so it wouldn't have rung any alarm bells during my laps, but on the ultrasound it shows extensive adeno.

I now have my hysterectomy booked for 19th June and am looking forward to getting my life back.

Good luck and don't give up!