Iris, I'm right there with you.... I am one of those minority too.... SUCKS. I want to get pregnant too and it just seems like such a nightmare that I can't... I also was told risks are low for surgery, but it just seems so scary. i just want someone to tell me its going to work, and its going to be ok... It just seems like such an unknown if it will work. =(

My tumour was 4mm when I tried to get pregnant for the second time. I was prescribed Clomid and it worked in the first month, maybe this could be prescribed before resorting to surgery?

Thanks, Dizzy! I was actually wondering about Clomid, but haven't been able to figure out whether it ever is prescribed in cases like this. I'll ask my doctor about it.

Sdczernicki--it's sooo nice to hear of someone else in the "minority." (although I'm sorry you're in the same boat as me--it does suck!) Everything I read online about my condition says it can just be treated with meds. Sometimes articles will mention there's a minority who it doesn't work for, but I never find any info on just WHO those other people are. Thanks for reaching out. My dr. is pushing surgery and also says it's low risk (apparently the anesthesia is riskier than the surgery itself!), but still....what IF... It's a pretty sensitive area to be messing around.

Update: Had another appt with my endo today. He still thinks surgery may be the best option, but we're upping my meds a little first to see if that can get my levels down low enough for ovulation. I asked about Clomid, and he did say that fertility drugs would be a good option, and noted that they could help me get pregnant faster, b/c between the time of scheduling the surgery and recovery and waiting for levels to normalize, it could be a year before getting pregnant, and the drugs work faster than that.

Hi Iris

I had the surgery back in 2001 when I was 17 years old. Unfortunately it was a reoccurring adenoma so it was basically all for nothing. I had a regular cycle for a few months post-op then everything stopped again. I too have been on Bromocriptine for years with little results. I am 29 now and ready to start our family. I am going to ask my doctor about clomid at my next appointment. Hopefully this will work for us. Although the surgery is low risk, for me the recovery was rough. And it does not mean that it will necessarily work. Best of luck to you.

Hi Iris - For surgery to be low risk you will need a surgeon who is highly skilled and has performed thousands of these procedures. Have you considered surrogacy as an alternative to getting pregnant?

I live near UCSF, which apparently has one of the top surgery centers for this top of surgery, so that is lucky! But, still, I worry about the risks, though they are small. Surrogacy sounds like a good alternative in theory, but I understand it is insanely expensive (in the $100K realm) so that is just not an option for us, unfortunately.

Hi Iris - India is a very popular choice for surrogacy. It costs much much less than in US. I suggest you perform further research on this alternative. All the best.

Thanks for the tip--I will check that out!
For now, I'm giving the meds another shot. We're upping my Dostinex dosage to try to get my levels down somewhat, and then will give the Clomid a try. I'm crossing fingers, although I've been so disappointed by meds before that I'm trying to not get my hopes up too much!

By the fact that your medication is limited in it's effect may mean you have "stalk effect" and the medication cannot quite get to the tumor in the gland.

Perhaps debulking the tumor a bit may make the medication work for you.

hello everyone,
it has been a year for me since i had my surgery. My micro tumor was about 8mm. So it wasn't very big but i had no reaction to medication. The doctors felt if they removed most of it that the medicine would react better. I am happy to report that before the surgery my levels were in the 300s but as soon as the surgery happened two days later they checked and it dropped down to 127. About a month after that i was back on dostinex and in three months time my levels were below 10. So, if you want to do it, i say go for it.. we know that it is possible they can not remove the whole tumor but atleast get rid of the stubborn part that won't go down. I am hoping now that i am once again back on dostinex that i will lose this darn weight i gained and become pregnant within a year! thanks for reading.

I feel the same way :/ I dont know what to do and its really stressful. I am currently on cabergoline and after 9 months i had an MRI done and it hadn't changed at all in size. Now the radiologyst and endo tell me that it could be a cyst or maybe im not reacting to the meds at all. How did your doctors know that it wasnt responding???

They knew I wasn't responding to the meds just by checking my prolactin levels. The meds lowered them a bit, but they never got normal, even on high doses of the meds. Plus, my periods never got regular. I've repeated the MRI several times, and the size is always the same.

Not sure what a cyst is relative to a tumor. I do know that some prolactinomas are resistant to the meds, though. Some doctors don't seem to know this, so be careful! Sometimes I felt like I had to educate my doctors, but I've since found a great doc at UCSF. When I told him that I didn't respond well to the meds, he immediate said that yes, some prolactinomas are resistant to the drugs.

Joemarie and Sunspot--what were your recoveries like? And where did you have your surgeries?

My 17 year old had surgery to remove a tumor and cyst in April. The surgery part went well, however, she now has diabetes insipidus. Make sure you look at ALL the fine print. Didnt even know what this was prior to the surgery. She had the best surgeons as far as Im concerned and her endocrinologist is keeping on top of it. Her prolactin levels are very low 2.7 at last check and follow up MRI coming in July.