What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Desperately seeking advice. Women only please!

H

hopeforever601

New member
I am a 29 year old mother of twins with cf and went through ivf to conceive.

The reason why we went through ivf is because I have abnormal uterine bleeding. Meaning for the past 5-6 years I have only gone I'd say three or four days in a row without bleeding. It totally cramps my lifestyle bringing me to tears knowing my intimacy with my husband suffers and daily routine with my babies is very hard with every time I go to pick them up I feel gushes coming out.

I have tried every pill imaginable, have had perfect pap smears, uterine biopsy's show nothing wrong and yet no one can help me.

My obgyn sees me about 1-2 times every two weeks and I am misearable. The next option is endometrial ablation which would lazer off the lining of my uterus but not get rid of my hormones if that is the problem making the bleeding lighter but still not managable.

I am on Provera now and that has brought relief but after I get off of it in 10 days I am told I will bleed heavier. I am going in next week for a d and c and am wondering if anyone with cf out there has this problem or has had this ever happen.

The only thing that cured me was pregnancy and I don't plan to ever do that again! I have a boy and a girl and so our family is complete. I am even considering the option of a hysterectomy. Anything to rid me of this bleeding.

Will I ever be normal again>

Kelly
29wcf mother of 7 week old twins.
 
H

hopeforever601

New member
I am a 29 year old mother of twins with cf and went through ivf to conceive.

The reason why we went through ivf is because I have abnormal uterine bleeding. Meaning for the past 5-6 years I have only gone I'd say three or four days in a row without bleeding. It totally cramps my lifestyle bringing me to tears knowing my intimacy with my husband suffers and daily routine with my babies is very hard with every time I go to pick them up I feel gushes coming out.

I have tried every pill imaginable, have had perfect pap smears, uterine biopsy's show nothing wrong and yet no one can help me.

My obgyn sees me about 1-2 times every two weeks and I am misearable. The next option is endometrial ablation which would lazer off the lining of my uterus but not get rid of my hormones if that is the problem making the bleeding lighter but still not managable.

I am on Provera now and that has brought relief but after I get off of it in 10 days I am told I will bleed heavier. I am going in next week for a d and c and am wondering if anyone with cf out there has this problem or has had this ever happen.

The only thing that cured me was pregnancy and I don't plan to ever do that again! I have a boy and a girl and so our family is complete. I am even considering the option of a hysterectomy. Anything to rid me of this bleeding.

Will I ever be normal again>

Kelly
29wcf mother of 7 week old twins.
 
H

hopeforever601

New member
I am a 29 year old mother of twins with cf and went through ivf to conceive.

The reason why we went through ivf is because I have abnormal uterine bleeding. Meaning for the past 5-6 years I have only gone I'd say three or four days in a row without bleeding. It totally cramps my lifestyle bringing me to tears knowing my intimacy with my husband suffers and daily routine with my babies is very hard with every time I go to pick them up I feel gushes coming out.

I have tried every pill imaginable, have had perfect pap smears, uterine biopsy's show nothing wrong and yet no one can help me.

My obgyn sees me about 1-2 times every two weeks and I am misearable. The next option is endometrial ablation which would lazer off the lining of my uterus but not get rid of my hormones if that is the problem making the bleeding lighter but still not managable.

I am on Provera now and that has brought relief but after I get off of it in 10 days I am told I will bleed heavier. I am going in next week for a d and c and am wondering if anyone with cf out there has this problem or has had this ever happen.

The only thing that cured me was pregnancy and I don't plan to ever do that again! I have a boy and a girl and so our family is complete. I am even considering the option of a hysterectomy. Anything to rid me of this bleeding.

Will I ever be normal again>

Kelly
29wcf mother of 7 week old twins.
 
H

hopeforever601

New member
I am a 29 year old mother of twins with cf and went through ivf to conceive.

The reason why we went through ivf is because I have abnormal uterine bleeding. Meaning for the past 5-6 years I have only gone I'd say three or four days in a row without bleeding. It totally cramps my lifestyle bringing me to tears knowing my intimacy with my husband suffers and daily routine with my babies is very hard with every time I go to pick them up I feel gushes coming out.

I have tried every pill imaginable, have had perfect pap smears, uterine biopsy's show nothing wrong and yet no one can help me.

My obgyn sees me about 1-2 times every two weeks and I am misearable. The next option is endometrial ablation which would lazer off the lining of my uterus but not get rid of my hormones if that is the problem making the bleeding lighter but still not managable.

I am on Provera now and that has brought relief but after I get off of it in 10 days I am told I will bleed heavier. I am going in next week for a d and c and am wondering if anyone with cf out there has this problem or has had this ever happen.

The only thing that cured me was pregnancy and I don't plan to ever do that again! I have a boy and a girl and so our family is complete. I am even considering the option of a hysterectomy. Anything to rid me of this bleeding.

Will I ever be normal again>

Kelly
29wcf mother of 7 week old twins.
 
H

hopeforever601

New member
I am a 29 year old mother of twins with cf and went through ivf to conceive.

The reason why we went through ivf is because I have abnormal uterine bleeding. Meaning for the past 5-6 years I have only gone I'd say three or four days in a row without bleeding. It totally cramps my lifestyle bringing me to tears knowing my intimacy with my husband suffers and daily routine with my babies is very hard with every time I go to pick them up I feel gushes coming out.

I have tried every pill imaginable, have had perfect pap smears, uterine biopsy's show nothing wrong and yet no one can help me.

My obgyn sees me about 1-2 times every two weeks and I am misearable. The next option is endometrial ablation which would lazer off the lining of my uterus but not get rid of my hormones if that is the problem making the bleeding lighter but still not managable.

I am on Provera now and that has brought relief but after I get off of it in 10 days I am told I will bleed heavier. I am going in next week for a d and c and am wondering if anyone with cf out there has this problem or has had this ever happen.

The only thing that cured me was pregnancy and I don't plan to ever do that again! I have a boy and a girl and so our family is complete. I am even considering the option of a hysterectomy. Anything to rid me of this bleeding.

Will I ever be normal again>

Kelly
29wcf mother of 7 week old twins.
 
T

thefrogprincess

New member
How aweful! I have never had this exactly, but for a while when I was about 18 I had etremely irregular periods. None of the different birth control pills I tried helped and I finally went on Depo Pervera and after the first month I never had a period. It was great, but effected my sex drive.

Have you asked about and IUD? I've never had one, but a friend of mine does and says that she doesn't get her period. They last for about 5 years depending on which one you get. I would look into this before hysterectomy. If you can save yourself a surgery you should. Good luck.
 
T

thefrogprincess

New member
How aweful! I have never had this exactly, but for a while when I was about 18 I had etremely irregular periods. None of the different birth control pills I tried helped and I finally went on Depo Pervera and after the first month I never had a period. It was great, but effected my sex drive.

Have you asked about and IUD? I've never had one, but a friend of mine does and says that she doesn't get her period. They last for about 5 years depending on which one you get. I would look into this before hysterectomy. If you can save yourself a surgery you should. Good luck.
 
T

thefrogprincess

New member
How aweful! I have never had this exactly, but for a while when I was about 18 I had etremely irregular periods. None of the different birth control pills I tried helped and I finally went on Depo Pervera and after the first month I never had a period. It was great, but effected my sex drive.

Have you asked about and IUD? I've never had one, but a friend of mine does and says that she doesn't get her period. They last for about 5 years depending on which one you get. I would look into this before hysterectomy. If you can save yourself a surgery you should. Good luck.
 
T

thefrogprincess

New member
How aweful! I have never had this exactly, but for a while when I was about 18 I had etremely irregular periods. None of the different birth control pills I tried helped and I finally went on Depo Pervera and after the first month I never had a period. It was great, but effected my sex drive.

Have you asked about and IUD? I've never had one, but a friend of mine does and says that she doesn't get her period. They last for about 5 years depending on which one you get. I would look into this before hysterectomy. If you can save yourself a surgery you should. Good luck.
 
T

thefrogprincess

New member
How aweful! I have never had this exactly, but for a while when I was about 18 I had etremely irregular periods. None of the different birth control pills I tried helped and I finally went on Depo Pervera and after the first month I never had a period. It was great, but effected my sex drive.

Have you asked about and IUD? I've never had one, but a friend of mine does and says that she doesn't get her period. They last for about 5 years depending on which one you get. I would look into this before hysterectomy. If you can save yourself a surgery you should. Good luck.
 
E

Emily65Roses

New member
My mom had that happen not long ago... She was bleeding nonstop and really heavily. She'd bleed right through extra strength tampons and get her sheets all nasty. She opted for a hysterectomy, and has been problem-free since. If you're really done with your family, I say get the uterus yanked out. Have them leave your ovaries so your hormones stay normal. As long as they leave your ovaries, you shouldn't have any problems. In fact, your life will be a lot easier sans that problem uterus.
 
E

Emily65Roses

New member
My mom had that happen not long ago... She was bleeding nonstop and really heavily. She'd bleed right through extra strength tampons and get her sheets all nasty. She opted for a hysterectomy, and has been problem-free since. If you're really done with your family, I say get the uterus yanked out. Have them leave your ovaries so your hormones stay normal. As long as they leave your ovaries, you shouldn't have any problems. In fact, your life will be a lot easier sans that problem uterus.
 
E

Emily65Roses

New member
My mom had that happen not long ago... She was bleeding nonstop and really heavily. She'd bleed right through extra strength tampons and get her sheets all nasty. She opted for a hysterectomy, and has been problem-free since. If you're really done with your family, I say get the uterus yanked out. Have them leave your ovaries so your hormones stay normal. As long as they leave your ovaries, you shouldn't have any problems. In fact, your life will be a lot easier sans that problem uterus.
 
E

Emily65Roses

New member
My mom had that happen not long ago... She was bleeding nonstop and really heavily. She'd bleed right through extra strength tampons and get her sheets all nasty. She opted for a hysterectomy, and has been problem-free since. If you're really done with your family, I say get the uterus yanked out. Have them leave your ovaries so your hormones stay normal. As long as they leave your ovaries, you shouldn't have any problems. In fact, your life will be a lot easier sans that problem uterus.
 
E

Emily65Roses

New member
My mom had that happen not long ago... She was bleeding nonstop and really heavily. She'd bleed right through extra strength tampons and get her sheets all nasty. She opted for a hysterectomy, and has been problem-free since. If you're really done with your family, I say get the uterus yanked out. Have them leave your ovaries so your hormones stay normal. As long as they leave your ovaries, you shouldn't have any problems. In fact, your life will be a lot easier sans that problem uterus.
 
C

coltsfan715

New member
All I can do is hug you .. virtually. I have this same issue. It seems to have gotten worse in recent month - I went almost all of December on my "period". The only thing for me is it is different from my period it does not involve the horrendous cramps that come with my period and is not as heavy it is just a constant annoying thing. I also tend to have issues with intercourse - but it is random. I have had this issue off and on the past few years and everytime it gets bad I change birth control methods. I just recently changed back to the original birth control I started taking at 18-19 (for cramps). I seem to be doing "okay" with that but again haven't been on it long enough to know if it is really making a difference.

I have talked to my docs about it and the transplant docs think it is CF related and my OB/GYN thinks it is related to all my meds. I will say this though. When I went through my work up for transplant the GYN I had to see at the transplant center cauterized some eroded cervical tissue and the bleeding seemed to ease up for a good while. I had that done in Feb of last year and it seemed to clear things up for about 8-9 months or so. Maybe that is something you can consider. I will say for what it is worth my regular GYN said that I looked "better" now post transplant. She has told me for years that I had inflammed cervical tissue and that she noticed a similar thing in most of her CF patients (she has several).

I am so sorry I understand the frustration and can completely sympathize.

I hope you find something that works for you and if you do please let me know <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take Care,
Lindsey
 
C

coltsfan715

New member
All I can do is hug you .. virtually. I have this same issue. It seems to have gotten worse in recent month - I went almost all of December on my "period". The only thing for me is it is different from my period it does not involve the horrendous cramps that come with my period and is not as heavy it is just a constant annoying thing. I also tend to have issues with intercourse - but it is random. I have had this issue off and on the past few years and everytime it gets bad I change birth control methods. I just recently changed back to the original birth control I started taking at 18-19 (for cramps). I seem to be doing "okay" with that but again haven't been on it long enough to know if it is really making a difference.

I have talked to my docs about it and the transplant docs think it is CF related and my OB/GYN thinks it is related to all my meds. I will say this though. When I went through my work up for transplant the GYN I had to see at the transplant center cauterized some eroded cervical tissue and the bleeding seemed to ease up for a good while. I had that done in Feb of last year and it seemed to clear things up for about 8-9 months or so. Maybe that is something you can consider. I will say for what it is worth my regular GYN said that I looked "better" now post transplant. She has told me for years that I had inflammed cervical tissue and that she noticed a similar thing in most of her CF patients (she has several).

I am so sorry I understand the frustration and can completely sympathize.

I hope you find something that works for you and if you do please let me know <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take Care,
Lindsey
 
C

coltsfan715

New member
All I can do is hug you .. virtually. I have this same issue. It seems to have gotten worse in recent month - I went almost all of December on my "period". The only thing for me is it is different from my period it does not involve the horrendous cramps that come with my period and is not as heavy it is just a constant annoying thing. I also tend to have issues with intercourse - but it is random. I have had this issue off and on the past few years and everytime it gets bad I change birth control methods. I just recently changed back to the original birth control I started taking at 18-19 (for cramps). I seem to be doing "okay" with that but again haven't been on it long enough to know if it is really making a difference.

I have talked to my docs about it and the transplant docs think it is CF related and my OB/GYN thinks it is related to all my meds. I will say this though. When I went through my work up for transplant the GYN I had to see at the transplant center cauterized some eroded cervical tissue and the bleeding seemed to ease up for a good while. I had that done in Feb of last year and it seemed to clear things up for about 8-9 months or so. Maybe that is something you can consider. I will say for what it is worth my regular GYN said that I looked "better" now post transplant. She has told me for years that I had inflammed cervical tissue and that she noticed a similar thing in most of her CF patients (she has several).

I am so sorry I understand the frustration and can completely sympathize.

I hope you find something that works for you and if you do please let me know <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take Care,
Lindsey
 
C

coltsfan715

New member
All I can do is hug you .. virtually. I have this same issue. It seems to have gotten worse in recent month - I went almost all of December on my "period". The only thing for me is it is different from my period it does not involve the horrendous cramps that come with my period and is not as heavy it is just a constant annoying thing. I also tend to have issues with intercourse - but it is random. I have had this issue off and on the past few years and everytime it gets bad I change birth control methods. I just recently changed back to the original birth control I started taking at 18-19 (for cramps). I seem to be doing "okay" with that but again haven't been on it long enough to know if it is really making a difference.

I have talked to my docs about it and the transplant docs think it is CF related and my OB/GYN thinks it is related to all my meds. I will say this though. When I went through my work up for transplant the GYN I had to see at the transplant center cauterized some eroded cervical tissue and the bleeding seemed to ease up for a good while. I had that done in Feb of last year and it seemed to clear things up for about 8-9 months or so. Maybe that is something you can consider. I will say for what it is worth my regular GYN said that I looked "better" now post transplant. She has told me for years that I had inflammed cervical tissue and that she noticed a similar thing in most of her CF patients (she has several).

I am so sorry I understand the frustration and can completely sympathize.

I hope you find something that works for you and if you do please let me know <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take Care,
Lindsey
 
C

coltsfan715

New member
All I can do is hug you .. virtually. I have this same issue. It seems to have gotten worse in recent month - I went almost all of December on my "period". The only thing for me is it is different from my period it does not involve the horrendous cramps that come with my period and is not as heavy it is just a constant annoying thing. I also tend to have issues with intercourse - but it is random. I have had this issue off and on the past few years and everytime it gets bad I change birth control methods. I just recently changed back to the original birth control I started taking at 18-19 (for cramps). I seem to be doing "okay" with that but again haven't been on it long enough to know if it is really making a difference.

I have talked to my docs about it and the transplant docs think it is CF related and my OB/GYN thinks it is related to all my meds. I will say this though. When I went through my work up for transplant the GYN I had to see at the transplant center cauterized some eroded cervical tissue and the bleeding seemed to ease up for a good while. I had that done in Feb of last year and it seemed to clear things up for about 8-9 months or so. Maybe that is something you can consider. I will say for what it is worth my regular GYN said that I looked "better" now post transplant. She has told me for years that I had inflammed cervical tissue and that she noticed a similar thing in most of her CF patients (she has several).

I am so sorry I understand the frustration and can completely sympathize.

I hope you find something that works for you and if you do please let me know <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take Care,
Lindsey
 
You must log in or register to reply here.
Top