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Hi:
I am new here, and was hoping to converse with others who are going through similar struggles. Hopefully I can receive some advice, words of wisdom, and support...I feel very isolated in this situation, and am driving myself, and everyone around me nuts!
My background....I am a female, 27 yrs old. I had precocious puberty, started menstruating at age 9, and have had problems from the start. I was first diagnosed with endometriosis at age 16. Was put on Lupron for one year... that was a diaster, and lead to serious and permanent health complications. I didn't learn of the dangers of the drug until after I had been on it for several months, and began to lose portions of my vision, and use of my hands. My endo returned following treatment and continued, despite having my 5th laparoscopy this past March.
I was diagnosed with Systemic Lupus in 2001. I started becoming very skilled at growing large endometriomas in 2002, for some reason, but never had them before. My largest has been just over 10cm. I was also diagnosed with Hashimotos Thyroiditis and Raynaud's in 2003. Continued to have laps, and the endometriomas recurred sometimes as early as three weeks following surgery. (They took a whopping 6 weeks this time - I guess I should consider myself fortunate!) I've had a few ruptures and one twist, but fortunately, it straightened out on its own. During my lap in 2007, I had an upper endoscopy, and was diagnosed with Autoimmune Atrophic Gastritis, which typically occurs in older people. It explains my constant stomach pain, B-12 and iron absorption problems, but is unfortunately incurable. It can lead to cancer, so I am scoped every 1-2 years to check for cellular changes. In addition to the Lupron "treatment", I have tried a variety of birth control pills, progesterone, physical therapy, biofeedback, and finally, was put on morphine to control the pain, as the repeated surgeries are just adding more scar tissue, and do nothing for me long-term.
My goal in life has always been to become a parent. I hoped to adopt one day when I'm older, however, I would like to have one biologically as well. After losing my beloved grandmother last year, whom I was full-time caregiver to for four years preceding her death, it has become extremely important to me to be able to have a baby. My partner and I have been trying unofficially since October of 2007, no luck yet.
Following the surgery this past March, which showed worsened endo, adhesions, and some loss of flow in the left tube (had the dye test too), my OB/GYN felt that it's imperative for me to have a baby as soon as possible. My other doctors aren't thrilled with my decision to have a baby due to my many health problems, however, they feel that if I am going to do it, it also needs to be soon, as the medical risks will increase with age and progression of the Lupus. I also need to be on immunosuppressives, which I cannot do while pregnant or TTC, so they are in support of the need to move things along, so that I can get back on treatment as soon as possible after the birth.
I started going to a high-risk OB evaluation, and then to a fertility center in late March. They are very nice, but I have to admit that I've been feeling a bit lost in the process. We did one cycle of Clomid and Novarel (HCG) injection. My partner and I did things naturally at home otherwise, no insemination yet, but they said that I ovulated well (watching ultrasounds and bloodwork) and that we could try it that way for a month. I was very disappointed to hear that it didn't work. I felt crummy while on the meds, very emotional, had some blurry vision, and very bloated. I also felt like my cyst was recurring...but I had really hoped that it had worked.
When I went in for my first cycle day ultrasound and estradiol test on Friday, I was surprised to hear that the cyst, which resembles an endometrioma, is back on the right ovary, at around 7 cm. The left also has several large cysts/follicles still there. The nurse called me later and told me that I couldn't take the medication this month because my estradiol is in the 500s, so we had to give it a cycle to calm down. I was SO upset...I had no idea that could happen, and the idea of losing a whole cycle really disappointed me.
I realize that some women have struggled with this for MUCH longer than I have, so I hate to complain about it to anyone. I guess the medical risk factor of my other diseases, the fear of the endo and infertility worsening quickly, and how crummy I've been feeling since starting the drugs is contributing to my sense of urgency, and the feeling that losing 28 days is a tragedy. Then my rational side kicks in and I feel silly, because in essence, it's only one cycle, etc etc.
I am having a meeting with the fertility dr this week so that we can go over everything again. I have so many questions...such as, what if the estradiol doesn't go down, what if this happens every month, and what if we go to stronger injectables, will it lead to ovarian hyperstim., if I reacted like this to just Clomid and HCG...etc.
Does anyone have any advice or words of wisdom to share? Is there anyone else on here who has other serious medical issues, and is trying to get pregnant anyway? And as a question to everyone and anyone...HOW do you manage the worry that comes along with the process? I am only in the very beginning stages...but now I feel like everything is a concern. I know that it's important to relax, but I think that may be a lost cause in my case! I try to keep things light and maintain a sense of humor, but internally, I feel like a mess. I just cannot seem to control the worry and frustrations...I don't know if it's the hormones or what. I am covered with pimples for the first time in years, so I think they may be playing some part in this.
I also worry that if I am able to conceive, there are SO many things that can happen even then....multiples, ectopic pregnancies, miscarriage, problems with the pregnancy, preeclamsia, premature births, stillbirth...Sometimes I feel as if it's a wonder that any babies are born in this country, with all that can go wrong! Yet I see on a daily basis how many women get pregnant and have children so easily, sometimes even when they didn't want to...it's very hard to get a grasp on that.
Would appreciate any comments possible...feel free to email if you prefer.
Thanks,
Kimberly
I am new here, and was hoping to converse with others who are going through similar struggles. Hopefully I can receive some advice, words of wisdom, and support...I feel very isolated in this situation, and am driving myself, and everyone around me nuts!
My background....I am a female, 27 yrs old. I had precocious puberty, started menstruating at age 9, and have had problems from the start. I was first diagnosed with endometriosis at age 16. Was put on Lupron for one year... that was a diaster, and lead to serious and permanent health complications. I didn't learn of the dangers of the drug until after I had been on it for several months, and began to lose portions of my vision, and use of my hands. My endo returned following treatment and continued, despite having my 5th laparoscopy this past March.
I was diagnosed with Systemic Lupus in 2001. I started becoming very skilled at growing large endometriomas in 2002, for some reason, but never had them before. My largest has been just over 10cm. I was also diagnosed with Hashimotos Thyroiditis and Raynaud's in 2003. Continued to have laps, and the endometriomas recurred sometimes as early as three weeks following surgery. (They took a whopping 6 weeks this time - I guess I should consider myself fortunate!) I've had a few ruptures and one twist, but fortunately, it straightened out on its own. During my lap in 2007, I had an upper endoscopy, and was diagnosed with Autoimmune Atrophic Gastritis, which typically occurs in older people. It explains my constant stomach pain, B-12 and iron absorption problems, but is unfortunately incurable. It can lead to cancer, so I am scoped every 1-2 years to check for cellular changes. In addition to the Lupron "treatment", I have tried a variety of birth control pills, progesterone, physical therapy, biofeedback, and finally, was put on morphine to control the pain, as the repeated surgeries are just adding more scar tissue, and do nothing for me long-term.
My goal in life has always been to become a parent. I hoped to adopt one day when I'm older, however, I would like to have one biologically as well. After losing my beloved grandmother last year, whom I was full-time caregiver to for four years preceding her death, it has become extremely important to me to be able to have a baby. My partner and I have been trying unofficially since October of 2007, no luck yet.
Following the surgery this past March, which showed worsened endo, adhesions, and some loss of flow in the left tube (had the dye test too), my OB/GYN felt that it's imperative for me to have a baby as soon as possible. My other doctors aren't thrilled with my decision to have a baby due to my many health problems, however, they feel that if I am going to do it, it also needs to be soon, as the medical risks will increase with age and progression of the Lupus. I also need to be on immunosuppressives, which I cannot do while pregnant or TTC, so they are in support of the need to move things along, so that I can get back on treatment as soon as possible after the birth.
I started going to a high-risk OB evaluation, and then to a fertility center in late March. They are very nice, but I have to admit that I've been feeling a bit lost in the process. We did one cycle of Clomid and Novarel (HCG) injection. My partner and I did things naturally at home otherwise, no insemination yet, but they said that I ovulated well (watching ultrasounds and bloodwork) and that we could try it that way for a month. I was very disappointed to hear that it didn't work. I felt crummy while on the meds, very emotional, had some blurry vision, and very bloated. I also felt like my cyst was recurring...but I had really hoped that it had worked.
When I went in for my first cycle day ultrasound and estradiol test on Friday, I was surprised to hear that the cyst, which resembles an endometrioma, is back on the right ovary, at around 7 cm. The left also has several large cysts/follicles still there. The nurse called me later and told me that I couldn't take the medication this month because my estradiol is in the 500s, so we had to give it a cycle to calm down. I was SO upset...I had no idea that could happen, and the idea of losing a whole cycle really disappointed me.
I realize that some women have struggled with this for MUCH longer than I have, so I hate to complain about it to anyone. I guess the medical risk factor of my other diseases, the fear of the endo and infertility worsening quickly, and how crummy I've been feeling since starting the drugs is contributing to my sense of urgency, and the feeling that losing 28 days is a tragedy. Then my rational side kicks in and I feel silly, because in essence, it's only one cycle, etc etc.
I am having a meeting with the fertility dr this week so that we can go over everything again. I have so many questions...such as, what if the estradiol doesn't go down, what if this happens every month, and what if we go to stronger injectables, will it lead to ovarian hyperstim., if I reacted like this to just Clomid and HCG...etc.
Does anyone have any advice or words of wisdom to share? Is there anyone else on here who has other serious medical issues, and is trying to get pregnant anyway? And as a question to everyone and anyone...HOW do you manage the worry that comes along with the process? I am only in the very beginning stages...but now I feel like everything is a concern. I know that it's important to relax, but I think that may be a lost cause in my case! I try to keep things light and maintain a sense of humor, but internally, I feel like a mess. I just cannot seem to control the worry and frustrations...I don't know if it's the hormones or what. I am covered with pimples for the first time in years, so I think they may be playing some part in this.
I also worry that if I am able to conceive, there are SO many things that can happen even then....multiples, ectopic pregnancies, miscarriage, problems with the pregnancy, preeclamsia, premature births, stillbirth...Sometimes I feel as if it's a wonder that any babies are born in this country, with all that can go wrong! Yet I see on a daily basis how many women get pregnant and have children so easily, sometimes even when they didn't want to...it's very hard to get a grasp on that.
Would appreciate any comments possible...feel free to email if you prefer.
Thanks,
Kimberly
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