Second Opionion Appointment today and even more confused!

Hello Everyone,

Gosh I sure wish I had a magic ball in my hand right now to look into the future. I went for my second opioion appointment today and now even more confused then before! I want to say that every Dr. is different and such and today I know this Dr. personally and he was with me for 5 years of my infertilty so I really love this Dr. I disagreed with some of the things he said today and that is OK.

So first we did our introductions, showing photos of my two children. He is the main reason we have baby #2 so he was thrilled to see our little girl. Talked to him about what problems I have been having and told him I was just tired of the birth control and stopped taking it a week ago. We talked about my smoking, which I already know is bad and I do need to quit. Then we talked about hysterectomy and such. He said "I don't think at 25 years old a hysterectomy is necessary. That sure I can do it, but then again you can catch a couple of fish with a shot gun too". He said for me to be on hormones the rest of my life afterwards would be difficult as it is and a hysterectomy is a huge surgery and has tons of complications. I told him that since I have been on birth control I have gained some weight. I worked really hard and lost a ton of weight, but since last year put on 20 pounds and now it seems it won't go away what so ever. He said that is not due to the birth control as it is just a pill with no calories and the main reason is I have been eating more...the only way to gain weight. He said if I did have the hysterectomy the excess hair would probably be gone, but he never got into PCOS and hysterectomy. He told me that I should hold off on the hysterectomy, take my birth control pills again, BUT do not take the 7 day other pills to get a period, but only do the white pills consistently to not get a period. Ragged on me to quit smoking."

SOOO in the end I am more confused. I disagree with the weight issue as it is EXTREMELY hard for me to lose weight. I do not believe it is due to eating because I can basically starve myself and still not lose weight. I am not saying it is all PCOS, because yes at times I do not eat as healthy as I should, but I do not believe that is the total cause. I asked him if going on the white pills ALL the time and not getting a period would make my chances of cancer increase and he said absolutely not and the extra pills are not needed. I told him, but I am having pain even when I did take birth control (I only stopped a week ago and was on it for 2 years religously), he said in that case have Dr. prescribe some narcotic pain medication for the times when you have pain. Maybe do a lap after you have quit smoking and been on the all white pills for a few months if you still have pain. He said even if he does do the Lap he does not think he will find very much endo because in my 2001 Lap there was just a tiny bit of endo.

Gosh why is this so difficult? I would just like to not have PCOS, not have the excess hair , weight issues, acne. Not have endo (even a small amount). I am tired of the pain, bloating, loose stools, fatigue and eveything else along with it. So I feel like I am stuck again with this age issue. It happened when I went to my Dr. at 18 trying to get pregnant and I can clearly remember him saying "Kelly, you are 18 you will have as many babies as you want". Then to go through 6 years of infertilty and in the end an IVF. Ok I think I am going to think about this and try to work through this. I agree a hysterectomy is a huge deal and maybe I should start out small and ask for a Lap to see exactly what we are dealing with. I have never heard of someone only taking the white pills and never getting a period. I always thought if you did not bleed there can be more problems. Then to be basically told PCOS has no issues with my weight and it is because I am eating more.

So what is your opionion ladies? I am just stuck right now. Thanks for letting me vent!

Kelly

kelly,
I don"t know why the second appt makes a person more confused, but the same thing happened to me. i went for a second opinion and when i came home i didn't know what to do. my second doc was like but ur 26. i said i know but i am done having kids. he said are u sure? i was like yes. he said ok i will do what u want. my doc never even brang up that i was only 26, but then again he has seen all i have gone thru! as far as the continual birth control i haven't seen much luck with it and the pain, but if it is painful periods then it could help. visist that endo site and read some postings on birth control. best of luck to u!!

Hi (((Kelly))),

Dr's have their special interests, and while your Dr may be a very good one I am sorry he didn't have any answers for you regarding your PCOS. My Dr appears to be in disagreement with your Dr. She has found research that proves that PCOS may have everything to do with your weight, and a hysterectomy will not get rid of the excess hair.

I very strongly suggest that you get another opinion from an endocrinologist. Hormones are their specialty, and PCOS is a hormonal issue. You owe it to yourself to get as much information as you can before you make any decision about a life changing surgery. I found my Dr by asking a compounding pharmacist to recommend a Dr who worked closely with them regarding hormones and who they felt was very knowledgeable with PCOS issues. Boy, they didn't hesitate to send me to my current Dr. and actually, she is not an endocrinologist, but a D.O. who has an interest in women's hormonal issues. I wish I had known that I could do that years ago.

I have also had many days in my life when I have just wished that I didn't have PCOS. It really does stink!!!

I am sending you some and hoping that you will be able to find a Dr who will be able to work with you to help you attain the best health you can. IMHO, it is never good to make a decision while you are confused on the issues.

S,
Kay

Thank you all for your replies. I have been doing some more thinking and I think I am going to ask my Dr. to do a Lap. I want to see exactly how bad the endo is and where it is. When that is accomplished then I believe I will have a more clear picture on where I stand.

Anneh, thank you for your post and it is a reality to think about. On one hand I am about 95% sure I would not be able to get pregnant again without IVF and ICSI procedure. With my last child who was IVF I got pregnant with triplets (a shocker), then lost 2 of them at 6 weeks and thought we lost everything. Ended up I had a huge blood clot in the uterus that was also risking the life of the 3rd one. They gave me a very small chance of the third one making it and I was put on home bedrest for 5 months and had contiously heavy heavy bleeding with numerous trips to ER because I thought I was hemorraging. Then I had a premature rupture and was admitted to the hospital till delivery. I had my beautiful little girl at 32 weeks and she was 4 pounds 11 ounces. All is fine and you would never tell now! The problem is IVF we were very limited with money then, it cost us over 20,000 out of pocket and the insurance covered over 90,000 for my hospital stay, NICU and all of that. Husband based our decsion on what we went through in the past, we would not have the money right now to cover more IVF's, husband is older then me and we feel very blessed to have our two children. But your point is very valid and something all woman should think about before undergoing a major surgery such as this. I have also thought about the possiablity (heaven forbid) if something were to happen to DH or we split up and falling in love with a new man and wanting to have chidlren with him. On that note I never see that happening and if by a very slim chance it would given my past history with fertility I have 200% made up my mind no more children. But I do want to thank you for bringing up that point as it is a very valid point.

Kay, I think you are right about the specialist on PCOS. I really have to look in my area and see if there is anyone that I would be able to see that deals with this disorder. That is something I will research and see if I can get an appointment with and discuss. I understand your diet is a huge part of it and making sure you are healthy, on the other hand it might be good to get my insulin checked and maybe be put back on the Glucophage in hopes that it will help. Also if there is not a permenant solution to the excess hair I know there is medication I can take to that will help decrease it.

On another note since I stopped BC a week ago now I have my period again. Cramps are pretty severe. Was really bad last night and started again this evening. Good think Gyno called in a pain medication for it today. The weird thing is it just hits you with the pain. No dull ache to warn you, just immediately sharp pains and you are clutching your stomach with tears immediately streaming down. I know everyone reacts differently to pain. I do not consider myself a baby in that department. I went through the birth of my first child with no pain medication (was hard but Lamaze helped!) plus I have had surgeries in the past and have dealt with pain. Just this pain comes and goes and does affect what I am doing. Doesn't care if I am in the middle of cooking dinner or taking care of kids, just hits me and I have to stop what I am doing immediately.

I may not understand why I am gong through this right now, especially at 25, but I do have faith that God has a plan and it may not be now, a month or even 25 years that I will have that answer, but I trust in his.

(((Kelly))),

The lap is a good idea. I hope you get the answers you need there.

I am glad your Dr gave you some pain pills to get you through this rough time. I hope it doesn't last long for you.

One thing that was hard for me, was making the transition from being on fertility treatment to just concentrating on getting the pcos symptoms under control. It is a whole different mindset. With the first my hormones just seemed to get continually worse. With the second, I am finally on the road to feeling better. Your focus will be different. It takes patience, but it can work. I also believe God has a plan, and I trust Him to be able to work that plan in your life.

Let us know the results of that lap. Remember, if you decide on a hysterectomy, we are here to help you prepare for it and your recovery. If you decide on other treatment first, we are also here to help you through that.

S,
Kay

i am so glad that u have decided to persue a lap - as i said in my earlier (sorry long) post - a hyst is just so final and you dont know EXACTLY whats going on.

I was rather concerned that your OBGYN was readily suggesting a hyst without a 'FULL' picture.

as others have said - just a recap - a hyst wont cure PCOS i dont think - PCOS can get a LOT worse with eextra weight and it also has something to do with insulin resistance - hence why metformin (a diabetic drug) is quite commonly used in PCOS.


Also with PCOS its EXTREMELY HARD to lower weight - and in fact metformin is actually sometimes used not just to help with the other symptoms of PCOS - but also to aid weight loss (as it helps with the levels of insulin i guess). I am VERY surprised thgat your OBGYN said PCOS does not cause higher weight - it is well known that some people with PCOS have REALLY BIG probs with weight and losing weight.

As Kay said, persue a referral to an endocrinologist - or reproductive endocrinologist - and maybe ask about metformin.

what sort of pain are you in - b4 period, after, during? Pain when going to bathroom? Pain when intercourse? With endo its more common to have pain BEFORE period starts, dyschezia (pain when going to toilet), dyspareunia (pain when having sex)

If you have time - tell us more about what type of pain u are in

BTW - it is quite common to take birth control with 'no break' - i.e no period. It is common to be told to take it that way if you have menstrual problems as well as endo - no period (hopefully) = no progression of endo (of course, knowing my luck - this analagy did NOT work for me but i am STRANGE in that sense - it DOES WORK FOR MANY LADIES - I just have a VERY severe case of endo that my other conditions make worse).

I would do some searches on the internet on birth control and menstrual probs and endo -


lastly thanks SO SO MUCH for your input from my post (help need advice re hyst decision)!!!

Hope i made sense on my first and also this post - again dont want to seem negative at all - but i am SO SO SO glad that you have held off the hyst for now - as i think a lap may be a better decision - ya know they may be able to help get rid of any endo etc etc.

Of course a hysterectomy may be your only option in the future - and of course we will all be here for you - but i am very glad that you are persuing a lap first to get to know the score

thanks again!!

Has anyone checked your thyroid levels? I had serious issues with gaining weight and not being able to lose it about 9 years ago. My dr. checked my thyroid and low and behold I have hypothyroidism. That compounded with severe endometriosis wrecked havoc on my body!

I don't know too much about PCOS, but when dealing with hormonal issues, it is my belief that weight always plays a part.

Just a suggestion! I too am glad to hear that you are having a lap before hysterectomy. It is a huge step. I also disagree with your dr who stated that there wasn't much endo the last time he checked. I have had two previous laps within 2 years of each other. The first one in 2000 where he stated that he lasered off every piece on endo and then in 2002 when it was even worse than the first time! Endo has a wonderful way of growing back rather quickly and without doing a lap, I don't know why your doctor would say that it is unlikely. It has been my experience that it is the total opposite of what he is saying.

Good luck to you in whatever you decide to do!

Hello PJL,

Thank you for your suggestion on checking the thyroid. When I talk to my gyn. I am going to ask to see a someone who deals with PCOS. Then at the appointment I am going to ask to get insulin checked, thyroid checked and a ton of other tests they can do to see if we can get it under control. I did have my thyroid checked about 3 years ago during a normal exam and that came back normal, so I am wondering if it can change within that time.

Yes, the second opinion appointment with Dr. #2 I really disagreed with him about the Endo coming back. I love him still, but disagree with some of what he said. I know that this is not IBS. I at first thought maybe (since symptoms are similar) it could be that. When I stopped BC pills a week ago and now since my period started again and all of it came back (pain, back pain, diarrhea, bloating etc.) so this tells me it is associated with the menstrual cycle which points to endo.

Thank you for your suggestion

Kelly

Hi Mich,

You asked what sort of pain I am in. It usually started 1-2 days before menstrual cycle, continues through menstrual cycle and then 1-2 days afterwards. It is not continuous 24/7 (thankfully!), but when it comes it is sharp pain that really makes you want to just clutch your stomach and ly in the fetal position. I do not have pain with intercourse. I have had a very few times where afterwards there was some dull ache, but nothing extreme and I am thankful for that. Pain while going to the bathroom..yes I do have that. It has been a habit that when on menstrual cycle I get horrible diarrhea (and I have had constipation) and I run to the bathroom with pain while going. Pain so bad that it hurts just to continue to go to the bathroom. I do not have pain while urinating though and not sure if that is also a symptom of it. I get extremely bloated to wear I do not want to where jeans and will wear comfy pants. Last night I felt like I had a football stuck down there and even DH felt my stomach and was surprised that it seemed larger. I get lower backaches. They are not as bad of pain as the cramps through. Heating pads really come in handy for that area. When I was on my last period I was laying down on my bed and felt extreme tenderness in my left ovary. I palpitated it and when I rubbed the area there was sharp pains, which hurt pretty bad. I have fatigue, which could be a sign of stress dealing with all of this or both Endo and PCOS. I just feel like I want to sleep and very tired.

At first I thought maybe this was IBS as I know the symptoms are pretty similar, but it is not constant through out my cycle, but related during the times of my periods. Thank you for telling me that woman do take all of the white pills continuously during their cycle. That is another option to talk with my gyno about.

Kelly

Kelly,

The above symptoms that you are speaking about sound so much like endo!! Brings me back to the good ole days! YUK!

When my thyroid was originally tested, all they ran was a TSH which was initially normal. They then went back and did an entire thryoid panel and it was very high! (Which indicated hypothyroidism, too low indicates hyperthyroidism, which could also be the cause of your bowel symptoms). In the past two years my levels have been fluctuating between too high and too low. Each time my body can tell me which it is. My doctor says that she has never seen anyone so sensitive to thyroid levels. She has to adjust my thyroid meds every two to three months to keep my levels dead in the middle. This is the only place that my body feels normal!The endo was messing with my hormones something fierce and then the thyroid on top of it, I was a MESS!

I hope that you find the right solution for you, I know first hand how awful these symptoms are.

Best wishes to you! Keep me posted on what you find out!