Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Hello Everyone, I know this is a topic that has been brought up from time to time but very seldom responded to... I have been sharing my history/story with a few members from this site & although there is no definative answer or solution to the issue it's nice to know we are not alone. I would love to share my story and hear from anyone who has had similar symptoms, or experiences... whether they have attended to it or not... I was born 7/11/74 (36 years old). I had 4 surgeries ages 2-10? Recently (1 year ago) being married and trying to conceive I've consulted a local Fertility specialist... I show consistently high FSH levels. I have never had genetic testing to see which type of BPES I have. I am the only one in my family with it which would lean more toward type 2 (without the fertility issues). However, the fact is, I have fertility issues so it is very likely I have type 1. When I first saw my fertility doctor I explained the whole concerns related to BPES and I was surprised that he was actually aware of the condition and it's relation to fertility. He conducted the usual FSH tests which showed high/bad. He then did another test Anti-Mullerian Hormone (AMH) which showed good... the two tests completely contradicted one another. At that point he said to me he was willing to work with me and try different methods as long as I went into everything with the understanding that I could likely be type 1 and the bad numbers are controlling the outcome. I decided to try and not get the genetic test. Even if the genetic test showed I do indeed have type 1 there is still a chance of getting pregnant as long as I am still producing eggs. I have a bunch of other issues going on as well as the FSH & estradiol levels. I had 3 HSG's done. First showed my right tube was blocked. I also had an abnormality/unexplained scar tissue in my uterus. My doctor performed a surgical proceedure to remove the scar tissue & repair my uterus. At the same time he performed a laparoscopy to explore my tubes to see if there was any indication of why the right tube was blocked and found nothing. He then performed another HSG which now showed both tubes were blocked. A few months later he performed the 3rd HSG which showed the same as the 1st, right tube blocked. In addition, I am prone to cysts on my ovaries. They come & go with each cycle usually just on one ovary, varying sides but sometimes on both sides in a particular month. I haven't been diagnosed with PCOS because I do not show any other symptom related to it. Just more bad luck i guess. Back in August I started my first trial of fertility meds. I was taking daily injections of Bravelle, double dosed. This resulted in one immature egg on the right side. September I repeated the treatment, triple dose of Bravelle, resulted in one mature egg on right and one slightly less on left. We figured we'd take advantage of the possibility of that left egg and proceeded with IUI insemination. No pregnancy resulted. (at these doses I should have been producing 6-8 eggs at the very least. I think this is where that FSH level thing showed it's ugly head. The Bravelle is definately FSH and triple doses over my already high dose didn't do a thing... makes sense). It was obvious that these injections are not going to work for me so that was our last try with that. Those 2 failed trials also showed that IVF with my own eggs is out of the question as well because I don't responsd to the meds to produce the quantity of eggs needed to make the harvest/extraction worth it. My best chance of pregancy is IVF with donor egg. We'd be willing to do this but it will cost around $25,000.00 without a guarantee. I've tried looking into fertility grants, etc. but they won't accept someone with my FSH levels and I haven't found any that help with IVF with donor eggs. In October we tried the clomid for the first time. The clomid is much cheaper than the injections ($9 in meds a month vs. $6,000.00) I produced 4 eggs of varying maturity! This time we did not do the insemination. Because my husband's semen analysis showed he's got super sperm, the doctor said we should save the $500 cost of the procedure because it is more to the benefit of those who have male factor problems which we do not. So we did timed intercourse... Yes, we actually got a perscription telling us exactly what time to have sex. Unfortunately, that trial did not result in a pregnancy either. November, December & January I had cysts on my ovaries and could not use the clomid. Finally this month I'm back on the clomid. We'll see what happens. Doctor also mentioned there's another drug he'd like to try called letrozole. This is similar in effect to clomid but works a bit different. As far as my cycle goes i've had quite the history... I didn't get my first period until I was almost 18 years old! From then on, it came sometimes 2 months in a row but more often 3-6 months inbetween. I was always told by regular gyno " It's because you're so skinny " . I went through the interrogation of family & friends on having an eating disorder.... I eat like a pig...it just never sticks! I was never athletic, just a high matabolism I guess. It wasn't until I discovered my condition had a name, BPES, & that it was related to infertility in women that I realized what could be going on. Oddly, I have gotten a period every single month starting in August of 2010.. without any outside help? (unless things like the Bravelle, Clomid, etc. had an affect that I don't know about. but I got a period the last 3 months in a row, when I wasn't taking anything). I don't know why but I suddenly just started getting regular periods. I have been keeping an official log since May of 2009. Here it is: 5/14/09-period 6/09-no period 7/09-no period 8/10/09-period 9/2/09-period 10/09-no period 11/6/09-period 12/4/09-period [29 days since last period] 1/6/10-period [34 days since last period] 2/6/10-period [32 days since last period] 3/6/10-period [29 days since last period] 4/10/10-spotting but not real period [36 days since last period] I took Prometrium 4/14/10-4/18/10, doc prescribed to induce period 4/22/10-full period 5/10/10-period [31 days since last period] 6/6/10-period [28 days since last period] I took Prometrium 7/5/10-7/9/10, again, doc. prescrived to induce period. 7/12/10-period [36 days since last period] I was on birth control 7/16/10-8/5/10 (this was to prevent further cysts & get cycle regular?) 8/9/10-period [29 days since last period] Bravelle injections 8/11/10-8/15/10 9/7/10-period [30 days since last period] Bravelle injections 9/9/10-9/23/10 9/24/10-Ovidrell injection (triggers ovulation) 9/26/10-IUI insemination 10/8/10-period [32 days since last period] I took clomid 10/12/10-10/16/10 10/23/10-Ovidrell injection 11/5/10-period [29 days since last period] 12/6/10-period [32 days since last period] 1/5/11-period [31 days since last period] 1/20/11-spotting, 1 day 2/5/11-period [32 days since last period] I took clomid 2/9/11-2/13/11 This is the most regular I've been my whole life! Maybe it's the drugs? I was never told I have a low body temp. I think my body temp. is typically average... high 97's to low 98's... maybe just slightly lower than average?. I never did the whole basal temp thing. I did try the ovulation kits but they were all over the place.... kind of inconclusive results that maybe I was ovulating... Doc. said " save your money & emotions, don't bother " . So I've been following that advice. I did take a fertilty, pee-stick, test once.... and it showed DOOM! NOT FERTILE! I guess that's just the high FSH level rearing it's ugly head, once again! Don't do it! Even though I already knew, the results were a bit tramatic. I'm always cold! Also, I have always shown very low blood pressure. Not sure if that has anything to do with any of this, just figured I'd throw that out there. Also, a new symptom... for the last month, I've been waking up anywhere 4am-7am... sweating! Not soaked through my clothes but enough to wake me and feel it dripping down my chest & back... & not every night but more often than not. I hope this is not menopause! I do not experience hot flashes at all during waking hours.... & I can't necessarily describe it as a " hot flash " at night other than I'm sweating... my skin kind of burns but overall I don't feel hot... I still want the covers on???? I would love to hear from anyone who has experienced similar symptoms... anything I find on BPES & infertility just states " premature ovarian failure " or " premature menopause " ... I would especially love to hear from anyone who experienced similar difficulty but did in fact conceive.... Thanks so much, Klein USA: Melbourne, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Dear I found your post really interesting, thank you so much for sharing what you are going through. My daughter, 8 yrs, has BPES. She is the first in our family with it. The reason I am responding to your post is because we have started the process of looking into POF. Yes, extremely early! I wasn't expecting to see any doctors about it till she was about 14, but she was referred to an endocrinologist by her geneticist. We went along to the appointment to ask questions more than anything else. I have been told that premature ovarian failure will usually be investigated after the age of 15 in the UK. This is in kids without BPES, and those with BPES may follow the same procedures. Hormone replacement therapy will be offered when there has been no menstrual cycles for a year. HRT will not prevent infertililty. BPES is not a contra-indication for freezing eggs. From what you tell us, you have been through a lot to try and fall pregnant. You are clearly very informed about infertility and POF and I admire your determination. Good luck Considering your high FSH levels, night sweats may be a sign of perimenopause. Menopause, as you know, is a label used after not having a period for a year. It happens to all of us ladies, with or without BPES. At 42, I am having perimenopausal type symptoms of my own and I can absolutely relate to the night sweats you describe. Thanks again for sharing your experiences. All the best. Regards (Colchester, UK) > > Hello Everyone, > > I know this is a topic that has been brought up from time to time but very seldom responded to... > > I have been sharing my history/story with a few members from this site & although there is no definative answer or solution to the issue it's nice to know we are not alone. > > I would love to share my story and hear from anyone who has had similar symptoms, or experiences... whether they have attended to it or not... > > I was born 7/11/74 (36 years old). I had 4 surgeries ages 2-10? > > Recently (1 year ago) being married and trying to conceive I've consulted a local Fertility specialist... > > I show consistently high FSH levels. > > I have never had genetic testing to see which type of BPES I have. I am the only one in my family with it which would lean more toward type 2 (without the fertility issues). However, the fact is, I have fertility issues so it is very likely I have type 1. > > When I first saw my fertility doctor I explained the whole concerns related to BPES and I was surprised that he was actually aware of the condition and it's relation to fertility. He conducted the usual FSH tests which showed high/bad. He then did another test Anti-Mullerian Hormone (AMH) which showed good... the two tests completely contradicted one another. At that point he said to me he was willing to work with me and try different methods as long as I went into everything with the understanding that I could likely be type 1 and the bad numbers are controlling the outcome. I decided to try and not get the genetic test. Even if the genetic test showed I do indeed have type 1 there is still a chance of getting pregnant as long as I am still producing eggs. > > I have a bunch of other issues going on as well as the FSH & estradiol levels. > > I had 3 HSG's done. First showed my right tube was blocked. I also had an abnormality/unexplained scar tissue in my uterus. My doctor performed a surgical proceedure to remove the scar tissue & repair my uterus. At the same time he performed a laparoscopy to explore my tubes to see if there was any indication of why the right tube was blocked and found nothing. He then performed another HSG which now showed both tubes were blocked. A few months later he performed the 3rd HSG which showed the same as the 1st, right tube blocked. > > In addition, I am prone to cysts on my ovaries. They come & go with each cycle usually just on one ovary, varying sides but sometimes on both sides in a particular month. I haven't been diagnosed with PCOS because I do not show any other symptom related to it. Just more bad luck i guess. > > Back in August I started my first trial of fertility meds. I was taking daily injections of Bravelle, double dosed. This resulted in one immature egg on the right side. > > September I repeated the treatment, triple dose of Bravelle, resulted in one mature egg on right and one slightly less on left. We figured we'd take advantage of the possibility of that left egg and proceeded with IUI insemination. No pregnancy resulted. (at these doses I should have been producing 6-8 eggs at the very least. I think this is where that FSH level thing showed it's ugly head. The Bravelle is definately FSH and triple doses over my already high dose didn't do a thing... makes sense). It was obvious that these injections are not going to work for me so that was our last try with that. Those 2 failed trials also showed that IVF with my own eggs is out of the question as well because I don't responsd to the meds to produce the quantity of eggs needed to make the harvest/extraction worth it. My best chance of pregancy is IVF with donor egg. We'd be willing to do this but it will cost around $25,000.00 without a guarantee. I've tried looking into fertility grants, etc. but they won't accept someone with my FSH levels and I haven't found any that help with IVF with donor eggs. > > In October we tried the clomid for the first time. The clomid is much cheaper than the injections ($9 in meds a month vs. $6,000.00) I produced 4 eggs of varying maturity! This time we did not do the insemination. Because my husband's semen analysis showed he's got super sperm, the doctor said we should save the $500 cost of the procedure because it is more to the benefit of those who have male factor problems which we do not. So we did timed intercourse... Yes, we actually got a perscription telling us exactly what time to have sex. Unfortunately, that trial did not result in a pregnancy either. > > November, December & January I had cysts on my ovaries and could not use the clomid. Finally this month I'm back on the clomid. We'll see what happens. Doctor also mentioned there's another drug he'd like to try called letrozole. This is similar in effect to clomid but works a bit different. > > As far as my cycle goes i've had quite the history... I didn't get my first period until I was almost 18 years old! From then on, it came sometimes 2 months in a row but more often 3-6 months inbetween. I was always told by regular gyno " It's because you're so skinny " . I went through the interrogation of family & friends on having an eating disorder.... I eat like a pig...it just never sticks! > I was never athletic, just a high matabolism I guess. It wasn't until I discovered my condition had a name, BPES, & that it was related to infertility in women that I realized what could be going on. > > Oddly, I have gotten a period every single month starting in August of 2010.. without any outside help? (unless things like the Bravelle, Clomid, etc. had an affect that I don't know about. but I got a period the last 3 months in a row, when I wasn't taking anything). I don't know why but I suddenly just started getting regular periods. I have been keeping an official log since May of 2009. Here it is: > 5/14/09-period > 6/09-no period > 7/09-no period > 8/10/09-period > 9/2/09-period > 10/09-no period > 11/6/09-period > 12/4/09-period [29 days since last period] > 1/6/10-period [34 days since last period] > 2/6/10-period [32 days since last period] > 3/6/10-period [29 days since last period] > 4/10/10-spotting but not real period [36 days since last period] > I took Prometrium 4/14/10-4/18/10, doc prescribed to induce period > 4/22/10-full period > 5/10/10-period [31 days since last period] > 6/6/10-period [28 days since last period] > I took Prometrium 7/5/10-7/9/10, again, doc. prescrived to induce period. > 7/12/10-period [36 days since last period] > I was on birth control 7/16/10-8/5/10 (this was to prevent further cysts & get cycle regular?) > 8/9/10-period [29 days since last period] > Bravelle injections 8/11/10-8/15/10 > 9/7/10-period [30 days since last period] > Bravelle injections 9/9/10-9/23/10 > 9/24/10-Ovidrell injection (triggers ovulation) > 9/26/10-IUI insemination > 10/8/10-period [32 days since last period] > I took clomid 10/12/10-10/16/10 > 10/23/10-Ovidrell injection > 11/5/10-period [29 days since last period] > 12/6/10-period [32 days since last period] > 1/5/11-period [31 days since last period] > 1/20/11-spotting, 1 day > 2/5/11-period [32 days since last period] > I took clomid 2/9/11-2/13/11 > > This is the most regular I've been my whole life! Maybe it's the drugs? > > I was never told I have a low body temp. I think my body temp. is typically average... high 97's to low 98's... maybe just slightly lower than average?. I never did the whole basal temp thing. I did try the ovulation kits but they were all over the place.... kind of inconclusive results that maybe I was ovulating... Doc. said " save your money & emotions, don't bother " . So I've been following that advice. I did take a fertilty, pee-stick, test once.... and it showed DOOM! NOT FERTILE! I guess that's just the high FSH level rearing it's ugly head, once again! Don't do it! Even though I already knew, the results were a bit tramatic. > > I'm always cold! Also, I have always shown very low blood pressure. Not sure if that has anything to do with any of this, just figured I'd throw that out there. > > Also, a new symptom... for the last month, I've been waking up anywhere 4am-7am... sweating! Not soaked through my clothes but enough to wake me and feel it dripping down my chest & back... & not every night but more often than not. I hope this is not menopause! I do not experience hot flashes at all during waking hours.... & I can't necessarily describe it as a " hot flash " at night other than I'm sweating... my skin kind of burns but overall I don't feel hot... I still want the covers on???? > > > I would love to hear from anyone who has experienced similar symptoms... anything I find on BPES & infertility just states " premature ovarian failure " or " premature menopause " ... > > I would especially love to hear from anyone who experienced similar difficulty but did in fact conceive.... > > Thanks so much, > Klein > USA: Melbourne, Florida > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi , Thank you so much for sharing! Unfortunately, when I was growing up we had no idea the association of infertility and BPES(I didn't even know that what I had was called BPES until about a year ago. I kind of just stumbled upon it). I think it is wonderful that you are starting early with your daughter! I wonder if I started earlier if I would have responded better to the fertility medicines and been able to produce a sufficient amount of eggs to maybe even save & freeze for when I was ready. I definately would have, had I known it was an option. Trying now, at 36 I'm lucky if I produce 1 egg on the doses used to typically produce many more. I think, among us females with BPES no time is too early to start exploring options such as these to perhaps " extend " our fertility! It sounds like your daughter is in wonderful hands with you as a proactive mother! I wish you all the best! & thanks once again for responding & sharing! Cheers! Klein Melbourne, FL;USA > > > > Hello Everyone, > > > > I know this is a topic that has been brought up from time to time but very seldom responded to... > > > > I have been sharing my history/story with a few members from this site & although there is no definative answer or solution to the issue it's nice to know we are not alone. > > > > I would love to share my story and hear from anyone who has had similar symptoms, or experiences... whether they have attended to it or not... > > > > I was born 7/11/74 (36 years old). I had 4 surgeries ages 2-10? > > > > Recently (1 year ago) being married and trying to conceive I've consulted a local Fertility specialist... > > > > I show consistently high FSH levels. > > > > I have never had genetic testing to see which type of BPES I have. I am the only one in my family with it which would lean more toward type 2 (without the fertility issues). However, the fact is, I have fertility issues so it is very likely I have type 1. > > > > When I first saw my fertility doctor I explained the whole concerns related to BPES and I was surprised that he was actually aware of the condition and it's relation to fertility. He conducted the usual FSH tests which showed high/bad. He then did another test Anti-Mullerian Hormone (AMH) which showed good... the two tests completely contradicted one another. At that point he said to me he was willing to work with me and try different methods as long as I went into everything with the understanding that I could likely be type 1 and the bad numbers are controlling the outcome. I decided to try and not get the genetic test. Even if the genetic test showed I do indeed have type 1 there is still a chance of getting pregnant as long as I am still producing eggs. > > > > I have a bunch of other issues going on as well as the FSH & estradiol levels. > > > > I had 3 HSG's done. First showed my right tube was blocked. I also had an abnormality/unexplained scar tissue in my uterus. My doctor performed a surgical proceedure to remove the scar tissue & repair my uterus. At the same time he performed a laparoscopy to explore my tubes to see if there was any indication of why the right tube was blocked and found nothing. He then performed another HSG which now showed both tubes were blocked. A few months later he performed the 3rd HSG which showed the same as the 1st, right tube blocked. > > > > In addition, I am prone to cysts on my ovaries. They come & go with each cycle usually just on one ovary, varying sides but sometimes on both sides in a particular month. I haven't been diagnosed with PCOS because I do not show any other symptom related to it. Just more bad luck i guess. > > > > Back in August I started my first trial of fertility meds. I was taking daily injections of Bravelle, double dosed. This resulted in one immature egg on the right side. > > > > September I repeated the treatment, triple dose of Bravelle, resulted in one mature egg on right and one slightly less on left. We figured we'd take advantage of the possibility of that left egg and proceeded with IUI insemination. No pregnancy resulted. (at these doses I should have been producing 6-8 eggs at the very least. I think this is where that FSH level thing showed it's ugly head. The Bravelle is definately FSH and triple doses over my already high dose didn't do a thing... makes sense). It was obvious that these injections are not going to work for me so that was our last try with that. Those 2 failed trials also showed that IVF with my own eggs is out of the question as well because I don't responsd to the meds to produce the quantity of eggs needed to make the harvest/extraction worth it. My best chance of pregancy is IVF with donor egg. We'd be willing to do this but it will cost around $25,000.00 without a guarantee. I've tried looking into fertility grants, etc. but they won't accept someone with my FSH levels and I haven't found any that help with IVF with donor eggs. > > > > In October we tried the clomid for the first time. The clomid is much cheaper than the injections ($9 in meds a month vs. $6,000.00) I produced 4 eggs of varying maturity! This time we did not do the insemination. Because my husband's semen analysis showed he's got super sperm, the doctor said we should save the $500 cost of the procedure because it is more to the benefit of those who have male factor problems which we do not. So we did timed intercourse... Yes, we actually got a perscription telling us exactly what time to have sex. Unfortunately, that trial did not result in a pregnancy either. > > > > November, December & January I had cysts on my ovaries and could not use the clomid. Finally this month I'm back on the clomid. We'll see what happens. Doctor also mentioned there's another drug he'd like to try called letrozole. This is similar in effect to clomid but works a bit different. > > > > As far as my cycle goes i've had quite the history... I didn't get my first period until I was almost 18 years old! From then on, it came sometimes 2 months in a row but more often 3-6 months inbetween. I was always told by regular gyno " It's because you're so skinny " . I went through the interrogation of family & friends on having an eating disorder.... I eat like a pig...it just never sticks! > > I was never athletic, just a high matabolism I guess. It wasn't until I discovered my condition had a name, BPES, & that it was related to infertility in women that I realized what could be going on. > > > > Oddly, I have gotten a period every single month starting in August of 2010.. without any outside help? (unless things like the Bravelle, Clomid, etc. had an affect that I don't know about. but I got a period the last 3 months in a row, when I wasn't taking anything). I don't know why but I suddenly just started getting regular periods. I have been keeping an official log since May of 2009. Here it is: > > 5/14/09-period > > 6/09-no period > > 7/09-no period > > 8/10/09-period > > 9/2/09-period > > 10/09-no period > > 11/6/09-period > > 12/4/09-period [29 days since last period] > > 1/6/10-period [34 days since last period] > > 2/6/10-period [32 days since last period] > > 3/6/10-period [29 days since last period] > > 4/10/10-spotting but not real period [36 days since last period] > > I took Prometrium 4/14/10-4/18/10, doc prescribed to induce period > > 4/22/10-full period > > 5/10/10-period [31 days since last period] > > 6/6/10-period [28 days since last period] > > I took Prometrium 7/5/10-7/9/10, again, doc. prescrived to induce period. > > 7/12/10-period [36 days since last period] > > I was on birth control 7/16/10-8/5/10 (this was to prevent further cysts & get cycle regular?) > > 8/9/10-period [29 days since last period] > > Bravelle injections 8/11/10-8/15/10 > > 9/7/10-period [30 days since last period] > > Bravelle injections 9/9/10-9/23/10 > > 9/24/10-Ovidrell injection (triggers ovulation) > > 9/26/10-IUI insemination > > 10/8/10-period [32 days since last period] > > I took clomid 10/12/10-10/16/10 > > 10/23/10-Ovidrell injection > > 11/5/10-period [29 days since last period] > > 12/6/10-period [32 days since last period] > > 1/5/11-period [31 days since last period] > > 1/20/11-spotting, 1 day > > 2/5/11-period [32 days since last period] > > I took clomid 2/9/11-2/13/11 > > > > This is the most regular I've been my whole life! Maybe it's the drugs? > > > > I was never told I have a low body temp. I think my body temp. is typically average... high 97's to low 98's... maybe just slightly lower than average?. I never did the whole basal temp thing. I did try the ovulation kits but they were all over the place.... kind of inconclusive results that maybe I was ovulating... Doc. said " save your money & emotions, don't bother " . So I've been following that advice. I did take a fertilty, pee-stick, test once.... and it showed DOOM! NOT FERTILE! I guess that's just the high FSH level rearing it's ugly head, once again! Don't do it! Even though I already knew, the results were a bit tramatic. > > > > I'm always cold! Also, I have always shown very low blood pressure. Not sure if that has anything to do with any of this, just figured I'd throw that out there. > > > > Also, a new symptom... for the last month, I've been waking up anywhere 4am-7am... sweating! Not soaked through my clothes but enough to wake me and feel it dripping down my chest & back... & not every night but more often than not. I hope this is not menopause! I do not experience hot flashes at all during waking hours.... & I can't necessarily describe it as a " hot flash " at night other than I'm sweating... my skin kind of burns but overall I don't feel hot... I still want the covers on???? > > > > > > I would love to hear from anyone who has experienced similar symptoms... anything I find on BPES & infertility just states " premature ovarian failure " or " premature menopause " ... > > > > I would especially love to hear from anyone who experienced similar difficulty but did in fact conceive.... > > > > Thanks so much, > > Klein > > USA: Melbourne, Florida > > > Quote Link to comment Share on other sites More sharing options...
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