I might have endometriosis/not PCOS

[Jen2008]

Hi I was told I had PCOS about 3 years ago by a Gynaecologist sp I have been seeing him every 3-6 months as nothing he has done has worked I've been on a number of different pill's yasmen, dienet ect.
Also every test he has done has come comes back normal. (scans, Blood tests)
So today I went to see him however ended up see another Doc who thinks I may have endometriosis.

my symptoms are-
Period pain - immediately before and during the period.
Ovulation pain.
Heavy bleeding, with big clots.
Irregular bleeding 2-8 week cycles.
Prolonged bleeding can last up to 14days to 8weeks.
Premenstrual symptoms.
Bloating.
weight gain.
exceiss hair growth.

Anyway I have been told to stop all Meds and to go back in 3 months and looking at having a laparoscopy in 6 months time.

[Stacie M]

I have both endo and PCOS. Why did your first doc diagnosis you with PCOS? Surely there was a reason, as most docs don't hand out the diagnosis.

As for the new doc, did he say why he thought it wasn't PCOS? I have never known excess hair or weight gain to be caused by endo, but those are symptoms of PCOS, and it is quite possible to have both. Also, when you say irregular bleeding, do you mean it can sometimes be 8 weeks between periods? I don't know of endometriosis causing your period to be late.

Also, a lot of women with PCOS don't see improvement with BCP's. Some do, some don't. And actually, if you are on BCP's and have endo, you should have seen a decrease in your endo symptoms (pain, etc).

For what it's worth, I have had dozens of scans and only have ovarian cysts on a few (the first didn't show up until years after my PCOS diagnosis).

I do however think a laparoscopy is a good idea. I had one that definitively diagnosed my endo. I would however get a second opinion or ask for more info on why they think it is one and not the other, because many women do have both.

[nellies_mommy77]

8 years ago I was dx with pcos and endo. Last month my RE (not the one who dx'ed me) told me that I no longer have pcos. So now I just have endo. To me, alot of the symptoms are the same. I still have abnormal hair growth (chin and side of face), acne, super bad pelvic pain no matter where I am in my cycle, PMDD, the list could go on and on. My gyn told me today that I have to start AF or come to cd 35 and then he will put me back on DepoProvera for a year or so. This will give me time to lose weight before I TTC any more. Also, at this point we will do a lap. I wish you luck!

[Stacie M]

8 years ago I was dx with pcos and endo. Last month my RE (not the one who dx'ed me) told me that I no longer have pcos. So now I just have endo. To me, alot of the symptoms are the same. I still have abnormal hair growth (chin and side of face), acne, super bad pelvic pain no matter where I am in my cycle, PMDD, the list could go on and on. My gyn told me today that I have to start AF or come to cd 35 and then he will put me back on DepoProvera for a year or so. This will give me time to lose weight before I TTC any more. Also, at this point we will do a lap. I wish you luck!

Interesting that they said you no longer have PCOS. Why is that? Was the original diagnosis incorrect? I don't understand...

[ms_tara]

Get a laparoscopy! I just had mine and I recovered within a few days. The best part about it was immediate relief. AF arrived a few days after surgery and I was so shocked and amazed at how much better I felt. No more pain! Get second opinions and find a doctor that will listen to you...

I am lucky (if you can call it lucky) in that I have all the classic symptoms of PCOS. The cystic ovaries, abnormal hair growth, hair loss and so on. I did have to go to several doctors before getting diagnosed initially, but it was worth it. I finally had an explanation for everything.

Get to the bottom of all of it. The more you know, the better you will be at controlling and managing your symptoms. I wish you the best of luck!

[nellies_mommy77]

Interesting that they said you no longer have PCOS. Why is that? Was the original diagnosis incorrect? I don't understand...

The RE's office said "PCOS can sometimes just burn out". This did not make sense to me so I called my gyn's office to discuss it with them. They explained it much better. They said "PCOS is a functional disorder so this means that it can come and go". That's pretty much it. So my understanding is that right now it apears as though I no longer have PCOS, but it could re-occcur at any time. My hormone levels have went back to normal and my U/S are not showing any cysts. I don't know why my PCOS has disappeared, but I am thankful. I now just need to focus on treating the endo and getting healthy.

[Stacie M]

The RE's office said "PCOS can sometimes just burn out". This did not make sense to me so I called my gyn's office to discuss it with them. They explained it much better. They said "PCOS is a functional disorder so this means that it can come and go". That's pretty much it. So my understanding is that right now it apears as though I no longer have PCOS, but it could re-occcur at any time. My hormone levels have went back to normal and my U/S are not showing any cysts. I don't know why my PCOS has disappeared, but I am thankful. I now just need to focus on treating the endo and getting healthy.

I think it's common for PCOS sufferers to have their symptoms wax and wane, but I have never heard of it exactly going away. I guess different docs have different opinions though. I would think if you still had other PCOS symptoms (hair growth, acne) they will still consider you having PCOS. Given the fact that PCOS diagnosis does not require cysts on the ovaries (that is just another symptom) and hormone levels can fluctuate so much.

[nellies_mommy77]

I think it's common for PCOS sufferers to have their symptoms wax and wane, but I have never heard of it exactly going away. I guess different docs have different opinions though. I would think if you still had other PCOS symptoms (hair growth, acne) they will still consider you having PCOS. Given the fact that PCOS diagnosis does not require cysts on the ovaries (that is just another symptom) and hormone levels can fluctuate so much.

My Fertility Specialist is an RE so I guess (I hope and pray) he knows what he is talking about. I know I feel better not taking the met. I am just taking it that this is a miracle healing and I am very thankful. Endo can also cause hormone levels to fluctuate, at least in my case. We shall see if the PCOS symptoms return. They (PCOS symptoms) probably won't for a while though since I am going on DepoProvera to treat the endo.

[froubaby]

Put your mind at ease... get full hormone blood work done to confirm/deny PCOS. Then yes, get started on discussing doing laparoscopy surgery as that is ultimately the only way to confirm/deny Endo.

Guessing around with whether you have something or don't have something based on symptoms is NOT the correct way to diagnose someone especially when there are tests and procedures that do that. If you felt like you were going to have a heart attack would you want your doctor to guess that you are about to have one or would you want your doctor to start hooking you up to heart monitoring machines to know for sure?

Good luck with everything!