Just Another Warning - Page 2

beekerbutt · 05-13-2008, 07:41 AM

I had a very rare thing happen during my pregnancy, vasa previa, that no one had ever heard of before. I know there's a lot out there to learn about but I thank you for sharing your experience. I have heard about this and am currently deciding what to do about my own situation.

I was having a period every other month, then stopped. Went on BCP. Wanted to have a family...no period. Tried fertility meds, got my period only after meds each month. Doc said he couldn't help. Got dx with PCOS and started a new diet, got my period. Started Metformin, lost weight, had ONE PERIOD and got pregnant. Now my son is 4 months old. We are exclusively breastfeeding. No period yet. My nurse wants me back on Met but I don't want to quite yet. UGH!!!! I'm scared about going to long but exclusive breastfeeding naturally delays the return of periods.

Have I mentioned I HATE PCOS!!!!!!!!!!!!!!!!!!!!!

Anyway, I'm glad you got some info and I hope things work out for you! Again, thank you for bringing this to other people's attention!

Becky

singularlydifferent · 05-14-2008, 02:45 AM

Thanks Everyone for the kind words and support. Believe me this is not something I wanted or asked for it took me forever just to get the original PCOS dx and then when my husband got scared I would get gestational diabetes and he nixed the idea of us having another child my Gyn told me they didn't treat PCOS unless I was trying to get pregnant so here I was left on my own again. Believe me I did ask questions and questions and more questions I just never received any answers. Anything I learned was from websights and I did get my PCP to prescribe met for awhile but as soon as she deemed my insulin levels ok she took me off of it. Not only that but no one has treated the excessive facial hair at all. SO here I am in the situation the so called Docs placed me in and wondering what to do. I have hope from the specialist but I won't be able to see him until after the GYN/Oncologist. I have that appointment on the 19th of this month. I have better hope with that one as well since he has at least had me get the pathology slides from the D&C for him to look over himself instead of just relying on someone elses report. Will let you all know more as I find out more and again Thank You so much for all the good wishes and thoughts. I felt alone and now I am starting to realize I am not. My Best Wishes to you all.

scmjem · 05-14-2008, 08:09 PM

It is wonderful you are spreading the word. My Gyn never said a word about it but my endo has cautioned me and will be giving me biopsies every 6 months since I already have pre hyperplasia.

05-14-2008, 08:35 PM

Wow this really is scary! i went about 7 years without having one and when i had one with meds it was really bad, i guess i know why now! Thanks for making people aware

Sarrah · 05-15-2008, 07:48 AM

Thanks for the warning.
How do we test for it?
I mean how do we know we are developing it?
Can they do ultraound?
Do we have to have a curette or soemthing and have it tested?
Or do you just have to make sure you have a P every 1 to 3 months?

Do you want to keep your uterus because you have not had babies yet or just because. I understand , even if I had had kids which i havent' I would want to keep my uterus.. except maybe in 50 s or 60s i probably wouldnt care.

I am sorry you are going through this and hope its ok for you.

scmjem · 05-15-2008, 12:46 PM

My Doctor did an ultra sound to see if the lining was abnormal and when it was they did a biopsy of the lining.

Constance · 05-15-2008, 01:17 PM

Tell your DH just because you had GB with your first PG does not mean you will get it with your second.
I was GB with my first but not my second. I was on a strict diet and checked my sugars often. I was borderline but never developed it. I also worked out until my 8th month.
Regarding the lining. I was on Yasmine or 10 months and bled the entire time. My endo did an ultrasound every month to check my lining which was very thick. She did not want to do surgery as she said it causes scaring and could make getting pregnant more difficult. She gave me a bunch of stuff to clean it out. She finally took me off Yasmine and the bleeding stopped and my lining thinned. The one thing that has helped me to maintain regular periods is metformin, and daily exercise. Now with that I can still skip periods but they are not as bad. I think the Met helped more than anything.
I am breastfeeding now and not on met. I am not sure that my new doctor will put me back on it as he thinks bcp's are the best. However I am fighting him! Do not want them at all. Not after 10 months of hell.
beekerbutt, I would not be concerned with no period while breastfeeding. Your progesterone levels are very high while bf which is why most women do not have periods while bf. Your lining should not be affected.

singularlydifferent · 05-16-2008, 03:18 AM

Hi I have gone through much of the same procedures that the other ladies have mentioned. I started off with an ultra sound because I was complaining of pain during my period and only during the week of my period. I had both the usual and the vaginal ultra sounds. It was during this that they seemed to have found a polyp and a couple of more "unidentified masses". After this they set me up for another procedure (can't really remember it's name right at the moment) and a biopsy of the polyp that they had identified. Anyway the results came back negative for cancer but the GYN wanted to get the polyp and the thick build up of lining out so a D&C was scheduled. This was the first time Endometrial Hyperplasia was ever even mentioned to me ever. Anyway after the D&C pathology report came back they identified it as complex atypical endometrial hyperplasia. Supposedly the worst type you can get of the hyperplasia but still NO cancer was found. After this my former GYN would only say I "needed" to have a hysterectomy for my own good. When I asked her why she didn't find any cancer did she I could never get her to give me an answer. She would only ask if I wanted a second opinion so I said yes sure why not, hoping maybe I could get more answers there. I did get a better explanation and did find out from the GYN/Oncologist that I was sent to that there was a medical treatment ( high doses of progesterone and D&C's every 3 months) but since I had already supposedly reached the end of having kids (Yes I have 2 wonderful boys 20 and 15 years old respectively.) then a hyster was the best and only option he would be willing to really discuss with me. Now this set me on edge I almost divorced my poor hubby over the D&C and wouldn't speak to him for over a week for making me have that done how in the world am I ever going to get my head wrapped around the fact that everyone seems to think I should be gutted like a fish (and yes that is the mental pic I have in my head of this procedure(ever see the pics?.....well I looked them up uuuggghhh!) gutted like a fish can't help but compare the two.) Ugh no never not coming at me with a knife. I mean he first off is treating this like cancer (which hasn't been found in me ever)Yes I know that according to the studies what I have is reported to maybe have a 25 to 30% cance of developing into cancer in my lifetime well you know what that leaves me with a 70% chance of never getting it in my lifetime. Also yes I know that women with my particular type of this disease are reported to have a 5 to 10% chance of having undiagnosed cancer right now. Well again that's 90 to 95% chance I DON"T so if you can't prove it then you are not going to gut me! They also want to make this the worse possible thing they want to make a vertical cut instead of minimizing the scar by making it horizontal and they want everything (Fallopian tubes, ovaries, uterus, and cervix and maybe even some lymph nodes!) again no...how am I even suppose to EVER feel like a woman again with my whole reproductive system gone? How am I even ever suppose to want to have sex again knowing that they have sewed up the top of my vagina and I am in surgical menapause and instead of sperm going where it should it's just wasted in some void ( my mental image here is the oil spills they use to show on the news only this would be in my body..gross.). Really what's the point of sex or even ever going back to a GYN I mean hello you took everything why should I waste my money?! Then you have the possible side effects if they aren't very careful I could end up being incontient I am only 40 just turned 40 I have no urge to be in depends for the rest of my life because the scaple slipped and the surgeon nicked or even cut something like my bladder or bowels. This is something they don't even like to address they keep saying I am now getting into the relm of "what if" well isn't that what they are doing too? I don't know I just know that if I can't get my head wrapped around it and have it done just to make everyone else Happy. I would only hate them for it. To be very honest with all of you I am NOT nice when in that kind of mood! I would never be able to stand being around them again and would have to leave so it's like I asked my mother and my husband which would you rather have, me here loving you and taking my chances on you losing me to a possibility and only a possibility of cancer or you losing me knowing I hate you and will never speak to you again and you will never know where I am or what's going on in my life. Because I can not let this happen to me. I just can't. I know all of that might not make sense to a lot of you but it does feel good to get it all out in the open but I doubt I'll change my mind about the hysterectomy. I can't just lose that much of me and my female identity on a possibility. I just could't stay sane after that. I have my tonsiles, my appendix and both of my sons were born vaginaly. Why would I let them have pieces of me now?

crunchymama · 05-16-2008, 04:01 AM

Okay I am super confused! Please someone explain all this to me! Back in August of 2007 I started bleeding all the time, I couldnt get anyone (a doctor) conserned about it until February of this year, they all counted it up to breastfeeding and being irragular. In march I saw a gyn who said I had a Endometrial Hyperplama, but you guys are talking about Hyperpasia....right?? Is there a diffrance or am I just confused!? The gyn I saw said she was not concerned about cancer given my age (26) and that my pap came back normal. But she wants to do a d anc c. I really dont want to do a d and c and would rather try and bring on periods with progesterone first. So I went to see Dr. Keefe at The Pope Paul Institute in Omaha and all she wants me to do is chart. Now I read this and think OMG I am going to get cancer. So what would you ladies do? Would you go in and do a d and c, find a doctor who will try progesterone or sit on this longer and chart? I am so beyond knowing what to do for myself. I just dont know any more!

beekerbutt · 05-16-2008, 04:56 AM

singularlydifferent--I love you for saying what you really feel!!!!! I have been having "issues" lately that my son was born by a medically necessary c-section. I hate that but everyone either says I'll get over it or count my blessings that I have a child. I am happy I am a mother and that my son survived our complication, but I'm still angry. I feel like he was taken from me, not like I gave birth to him. I feel like I wasn't even an active participant in his birth! I would feel the same way you do in your situation! My Mom was having problems and went in to see what it was. I went with her. The doc told me that she'd have to have a hysterectomy and I told my Mom. I was DEVASTATED for her...she on the other hand was fine. So I love that you said how you feel. I do hope everything works out for you! Again, thanks for bringing this up and making so many people take notice!!!

Becky

Stacie M · 05-16-2008, 10:21 AM

Quote:

Originally Posted by crunchymama

Okay I am super confused! Please someone explain all this to me! Back in August of 2007 I started bleeding all the time, I couldnt get anyone (a doctor) conserned about it until February of this year, they all counted it up to breastfeeding and being irragular. In march I saw a gyn who said I had a Endometrial Hyperplama, but you guys are talking about Hyperpasia....right?? Is there a diffrance or am I just confused!?

I don't know what hyperplama is, and I couldn't find it online. But, I am fairly certain that if your doc said endometrial hyper---- they meant hyperplasia (thickening of the uterine lining). It is a risk factor for later developing endometrial cancer, although it isn't cancerous itself.

There are treatments options out there besides D&C, but I would imagine their effectiveness depends on how thick the lining is and how your body responds to them.

If yours is severe, they would probably recommend a D&C and then progesterone usage to induce AF regularly to prevent the lining from thickening so much.

Sadly, doctors seem to blow off irregular/absent periods without understanding themselves what the patients are at risk for. I was going over 9 months between AF and my GP told me not to worry about it "until your ready to have babies." This went on for years until I got a decent doctor after ending up in the ER for excessive bleeding (after close to a year without AF, a lot of lining was in there trying to shed). I ended up having to go on progesterone to get it under control.

singularlydifferent · 05-20-2008, 04:11 AM

Hello Ladies well here I am again and having now seen 2 regular GYN's and now 2 GYN/Oncologists I have no good news to report. This last one agreed with the other 3 that if I am not going to have another baby then the hysterectomy is the method of choice over the medical option. I have refused and will keep refusing for as far as I can see. I guess what bothers me the most is the oh so very casual way they have all just decided that since I seem to be done with that particular body parts function it is now disposable. You know what, my reproductive system is not disposable! At least not to me. Besides they still can't prove I have or will develop endometrial cancer it's all a big what if and I seem to set thier teeth on edge because I don't want to be a good sheep and go along with the program. In fact this doctor got upset when I told him I wouldn't be gutted like a fish, he informed me that's not what is done to people but only to animals. I asked him how else should I describe it then. He changed the subject. I don't know ladies I am scared of getting cancer but I am also scared of never feeling like I am a woman again. My hubby just doesn't get it, I mean he is being supportive but he really wants me to have this surgery he says that he just wants to make sure I grow old with him. I know sweet right. I just can't get my head around why they (the docs) won't help me try another way, it's there they have all told me it was but I guess they just don't want the hassel of actually having to try and help someone. I don't know. What I do know is that I am taking sometime off of doctor's for awhile and am just going to be. Maybe in a few weeks or so I'll pick up the fight again (or at least try and get in with that specialist on PCOS) but I need sometime off. I have been dealing with this mess since DEC/JAN and I am so tired. I will try and keep you all updated though.

Now CrunchyMama what I would do if I were in your shoes and I have been is go ahead have the D&C get all the old stuff you can cleaned out of there and let them make sure that you are good to go and exactly what form of Hyperplasia you have. There are 4 types as far I have been able to find. There is simple hyperplasia and simple hyperplasia w/ atypia then there is complex hyperplasia and complex hyperplasia w/atypia (this is the most severe and the one I have) so have the D&C get your diagnoses and then have your doc make the best plan for you hopefully it will be the medical treatment but if not then make sure you fight for what is right for you. What I feel you should know is this, all of my paps were normal too that doesn't really seem to mean alot so don't use that as your guide. Also Endometrial Hyperplasia is a pre-pre cancerous condition or depending on how the condition is typed (see the above) a pre-cancerous condition. Any web sight you find will describe it as such. I have used ask.com and type in endometrial hyperplasia to find more sights and info. SO don't let anyone tell you that this is something to ignore it isn't. Also if you are heavy (again like me) try to lose wieght I know it's hard believe me I know, but this condition is triggered by excess estrogen and the docs aren't telling you (if they were like mine) that fat stores the estrogen that your body makes so that just makes it all worse. Good Luck Cruncy Mama my thoughts and prayers are with you and all the other ladies here as well.

BEEKERBUTT I can't forget you I SO APPRECIATE your kind words and feel like I just want to give you a big hug for understanding my feelings and lending me your support it means more than you will ever know and I am so grateful. I can only imagine that I would feel the same way if I had to have had a c- section. I was very lucky I didn't but what I do know is that while I would be feeling the same about not getting to participate and feeling like he was ripped from me I know that in your heart you are just glad that he is here and alive and healthy. I believe that if I were in your position then every time I started to feel angry about how he was born I would go and hold him (skin to skin if you can manage it) and try to let the love that he is here and doing well overcome the anger. Maybe that would work to help you come to grips. It's the best advice I have and I so admire you for being brave enough to share those feelings here in the thread I started. You are very brave.

Thank you also for telling me about your Mom. I have found that most of the women I have talked to that are happy with thier hysterectomys are older women or women that thier problems have negativly affected thier lives. I am not in either catagory so I can't feel like this is what has to happen to me not now. I have no severe issues and there is no real negative impact on my day to day life and I am only just turned 40 so not nearly old enough to want anything yanked out of me. So off on the great doctor hunt I go...well after a little rest I think.

Anyway thank you all for listening and putting up with my ranting. I will keep you all as up to date as I possible can.

fyrelight74 · 07-26-2009, 02:47 PM

I realize the last post was over a year ago. I'm a new member here, however, who has gone through the endometrial hyperplasia thing... several times. I keep fighting a hysterectomy, and so I'm taking progesterone again. Megace threw me into full Diabetes; Prometrium is much nicer to me. I of course still take metformin for the diabetes.

I have endometrial biopsies several times a year; I'm going to ask for a D&C again soon since it has been several years.