Discussions By Condition: Sexual conditions

Ovarian Agenesis

Posted In: Sexual conditions 23 Replies
  • Posted By: Anonymous
  • January 20, 2008
  • 02:06 AM

Does anyone else have this? I have been a human lab rat for the past 10 yrs and am pretty tired of it. In case you don't know it means that I was born with out ovaries. The Dr.s pretty much tell me that it is very very rare. I am on HRT. First it was estrogen and progest tabs then birth control, then BC w/ a higher estrogen level, then creams, patches, all natural pills, now I am on Activella (for women in menopause). With out the medications my body thinks it is post-menopausal (I am now 26, found this out when I was 16 after never getting my period. I had the uterus of a 4 yr old). With the medication I am on now I still get night sweats and panic attacks so I don't think it is doing the trick but I can't afford insurance and haven't gotten my hormone levels tested in years. I am just really worried about the cancers, side effects, and osteoporosis (sp?) that is associated with what I have. I feel like no Dr. really knows what to do and I really just feel like breaking down. If you have this, or know someone who does, or know a really great repro endo please let me know. I see a great woman now (well, I did anyway) but she put me on these pills to just "get me by"...I just have a feeling it is not working! Sorry this is so long, I'm just really fed up! Thanks!

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23 Replies:

  • Does anyone else have this? I have been a human lab rat for the past 10 yrs and am pretty tired of it. In case you don't know it means that I was born with out ovaries. The Dr.s pretty much tell me that it is very very rare. I am on HRT. First it was estrogen and progest tabs then birth control, then BC w/ a higher estrogen level, then creams, patches, all natural pills, now I am on Activella (for women in menopause). With out the medications my body thinks it is post-menopausal (I am now 26, found this out when I was 16 after never getting my period. I had the uterus of a 4 yr old). With the medication I am on now I still get night sweats and panic attacks so I don't think it is doing the trick but I can't afford insurance and haven't gotten my hormone levels tested in years. I am just really worried about the cancers, side effects, and osteoporosis (sp?) that is associated with what I have. I feel like no Dr. really knows what to do and I really just feel like breaking down. If you have this, or know someone who does, or know a really great repro endo please let me know. I see a great woman now (well, I did anyway) but she put me on these pills to just "get me by"...I just have a feeling it is not working! Sorry this is so long, I'm just really fed up! Thanks!HiI also have ovarian agenesis.It´s the same story: I found out when I was 18, Have tried 4 diferent drugs (am 24 now). I am now on birth control pills which help fairly good. I still got sweats, but I don´t get dizzi now. I used to get dizzi all the time. Thats how i found out. I puket at least every week at work and was werry dizzi and did not bleed monthly.I am from a smal country so I don´t get as good help as I would want. But the Dr. says that I problably need to change between drugs all my life. Because one drug will only work for a time.Hope that helps
    Anonymous 42789 Replies
    • October 6, 2008
    • 10:32 AM
    • 1
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  • You're not a guinea pig. Not having ovaries implies that you can not produce the female hormones (and no ovulation). I'm an endocrinologist and I from time to time test the blood level of estrogen and progestin obtained with the pills in my patients. All is about the proper replacement of those hormones. The results usually are very good without side effects.
    Anonymous 42789 Replies
    • January 26, 2009
    • 07:54 AM
    • 0
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  • I am 22 years old and have Ovarian Agenesis as well. I found out at the age of 16 because I hadn't menstruated yet and had little or no breast development. I was told my ovaries didn't develop and I would never be able to have children. I would really love to talk to someone about this and become more educated on this condition. My e-mail is Jashley86@gmail.com if anyone cares to chat about it! Thanks!
    Anonymous 42789 Replies
    • February 7, 2009
    • 05:55 AM
    • 0
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  • Hi, I too was born without ovaries, i knew at the age of 15, i am now 26. I am also fed up with all this, I am afraid to even get in to a relationship. I wish they can find something that will help us somehow with all this new discovery of the medical world. i really want to be able to have my own child and not an egg doantion. sometimes i dream that there is a call implant in the place of the ovary and it helps a new one grow.. I know it sounds crazy but sometimes I wish it were true... I have been on pregnancy pills for about 11 years, never changed it is works well with me...
    Anonymous 42789 Replies
    • February 13, 2009
    • 08:25 PM
    • 0
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  • Hi there, I too have this condition, although here (New Zealand) they call it primal ovarian failure. I discovered it about the same time as everyone else seems to - when I was 16, after never having got my period. I have to say, it is such a relief to hear that there are other people out there going through the same thing as me! I have never met or heard of anyone who has had it. Even my doctors say that they have never treated anyone with the condition. I have been on HRT and a drug called alendronate which treats osteoporosis. I have found that both are fine, i haven't had any side effects, and I'm lucky that we have a good public health system here. However, I absolutely understand the sorrow that you describe about not being able to have children. The condition definitely affects relationships, or at least my approach to them. I am now (at age 30) in a relationship with a lovely guy who didn't even blink when i told him and we intend to have kids in teh next couple of years. They won't be biologically mine of course, but I suppose life just isn't always the way we want it.Anyway girls, kia kaha (be strong), just wanted to let you know I understand, you're not alone out there.Lucy
    Anonymous 42789 Replies Flag this Response
  • I am 22 years old and have Ovarian Agenesis as well. I found out at the age of 16 because I hadn't menstruated yet and had little or no breast development. I was told my ovaries didn't develop and I would never be able to have children. I would really love to talk to someone about this and become more educated on this condition. My e-mail is Jashley86@gmail.com if anyone cares to chat about it! Thanks!Hi,I am 30 years old and found out at the age of 16 that I had no ovaries. The doctor at the time put me on hormone pills(Premarin) because he said i never went thorugh puberty. At age 20 I was still wearing a size 36A bra. After the pills i started to develop hair in my pubic area as well as my yunderarms. I was told that I need to take these pills for the rest of my life. Today I am a 36DD without any alterations. I am trying to find egg donors because i want a child. I do not believe what the doctors have told me because of the size my breasts have become. I am going to numerous doctors and having numerous tests performed. I will keep you updated.
    Anonymous 42789 Replies
    • January 19, 2010
    • 02:39 AM
    • 0
    Flag this Response
  • Does anyone else have this? I have been a human lab rat for the past 10 yrs and am pretty tired of it. In case you don't know it means that I was born with out ovaries. The Dr.s pretty much tell me that it is very very rare. I am on HRT. First it was estrogen and progest tabs then birth control, then BC w/ a higher estrogen level, then creams, patches, all natural pills, now I am on Activella (for women in menopause). With out the medications my body thinks it is post-menopausal (I am now 26, found this out when I was 16 after never getting my period. I had the uterus of a 4 yr old). With the medication I am on now I still get night sweats and panic attacks so I don't think it is doing the trick but I can't afford insurance and haven't gotten my hormone levels tested in years. I am just really worried about the cancers, side effects, and osteoporosis (sp?) that is associated with what I have. I feel like no Dr. really knows what to do and I really just feel like breaking down. If you have this, or know someone who does, or know a really great repro endo please let me know. I see a great woman now (well, I did anyway) but she put me on these pills to just "get me by"...I just have a feeling it is not working! Sorry this is so long, I'm just really fed up! Thanks!I too was a human guinea pig 30 years ago! I was born with out ovaries and fallopian tubes. My doctor also said it was rare and had never treated it before. After not reaching puberty by 18 we started testing and ended up with the diagnosis after a laporscopy at 20. I found it more intriguing than being fed-up. I did the research myself at the university medical center library (pre-internet!). The doctor and I decided to go with the HRT to avoid early menopause and osteoperosis. The hardest part was the first few years it took to find the right chemical cocktail that works for me: first the pill, then premarin and have had the least side-effects with the climara patch. With HRT I went thru puberty in my 20's, grew 7" taller and filled-out to a D cup. At 37 I had a hystercotomy to remove the uterus. I'm now 47 and trying to decide if I want to quit the HRT and go through menoupause. Just relax, it will be OK
    Anonymous 42789 Replies Flag this Response
  • Hi i am 16 year of age i was borne with no ovaries iv none for as long as i can rember alomst every night i have night mears about all the surdries iv had it upsets me cuz all it makes me think about is wats goin to happin with all the difrent meds an shots an surdries why all thge testing why not just some pills to make my brest grow an be done with it i sont realy under stand did any of you other girls have surgers
    Anonymous 42789 Replies Flag this Response
  • Hi, Wow... i have never met anyone with the same symptoms as me, i always thought i was alone and have previously felt very sorry for myself which i spose i still sort of do.Like most of you i also discovered when i as 16. To the 16 year old... i remember what it felt like to go through this. Just be strong and make sure you have friends and family around you to support you. I know its easier said than done and i sometimes think i was too young to find out something like that. But i got through it, I am now 28 and to start with my doctors were firing all sorts of diseases at me until they finally discovered i had primary ammonorrea (not sure on the spelling!). I think this must be the same type of thing as all of you on here because i was born without ovaries (just had streaks at the end of my tubes) and my womb was the size of a 7 year olds, also my bones were quite weak. I had lots of scans done and also lots of dexa scans to monitor my bones. Plus i had an exploratory operation (keyhole) to find these streaks and also to take a biopsy from them to ensure they were not cancerous. Thankfully they were not. After the correct diagnosis they finally decided on the treatment... the pill (ordinary contraceptive pill). I have been on this for years now and it was explained to me that there was no risk of me getting cancer from being on the pill for too long like people who have ovaries as i was not producing oestrogen which usually heightens the risk when taking the pill. Anyway... I am now 29 and my bones are now just below the normal level and my womb has grown enough for me to be able to carry, although still a bit weak so i would need medical help.Sometimes i still feel very alone but hearing all your stories has really helped me.Would be good to hear from you and to share stories, my email is k8poole@hotmail.com
    Anonymous 42789 Replies Flag this Response
  • I cannot believe it has taken so long for me to find people in the same boat as me. i found out when I was 15, as hadnt started my periods and was completely undeveloped. I got taken in for an ultrasound where I was told, quite bluntly, that I had no ovaries, I was one in a million and would never have children. i dont know about the rest of you but I felt completely on my own, I was never offered any counselling or support by the NHS, my family did what they coud but they didnt know what to say or do, as all I had ever wanted was to get married and have kids. I was put on Prempak C and told I would have to take HRT for the rest of my life. Because I was so upset, I basically rebelled and didnt take the tablets, maybe one a month as felt why should I have periods if I didnt have to? Eventually, I tried to be sensible, and like a lot of you, got put on all sorts of different patches and pills. I am now 31, and have tried to put this to the back of my mind all my life, but it is apparent in everything I do. I hate talking to anyone about it as I jjust get upset, I have found relationships exceptionally hard as tried to avoid getting close to anyone as didnt want to tell them. Therefore I feel I have mostly spent the last 10 years or so getting involved with men who were effectively unobtainable, ie affairs or one night stands. I have been with someone now for 4 months, and I still cannot bear the thought of having to bring it up. I feel a mixture of bitter and emotional about the situation to this day, and as much as I try and hold it back, I do find it difficult when virtually all of my friends are now pregnant or have children. My GP is useless and doesnt seem to know much about the subject, which is fair enough, but I really want to know what the options are now and the costs involved? Also if there are any support groups?If there are none - then I think it is vital in supporting us all to consider starting one and knowing that we are not on our own x
    Anonymous 42789 Replies Flag this Response
  • I totally understand the pain you describe being unable to bear children. The condition affects the relationship permanently, or at least my approach to them. Now I'm (at the age of 30) in a relationship with a sweet boy who did not even blink when I told him and we intend to have children in the next couple of years.
    Anonymous 42789 Replies Flag this Response
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  • I have this too. I found out when I was 16 and now I am 18.I am glad to know I am not so alone. There are lots of sites/support groups for people who can't have children or are going through premature menopause, but it's not the same as being born without ovaries. I never had a period and I never developed normally. I never had a time when I thought I was normal and could just feel confident. I think that's different to people who become infertile later.Now I have bad self confidence issues around guys. Before I was scared to date people because I thought I was different, and now I LNOW I'm different and I'm still scared. I'm scared how they would react when I tell them, and I feel guilty that it might upset them so I push everybody away. A part of me is telling me that that is a stupid tthing to think, but the fact that I have nobody I can talk to about it makes me feel even more alone.I have told some close friends, but I told them I was OK with everything. I know they'd be supportive if I told them about the issues I'm having with relationships (or even the idea of them) but I don't think I can say any thing without crying and I don't want to cry infront of them.So I'm glad I found this forum. It's nice to hear that some of you are in relationships and are happy and that people don't mind that their partners cant have kids. It makes me think I'm being stupid to push people away. I'm sorry to gush and be so "poor-me" but I was having a bit of a down moment and I didn't know what to do or how to feel better. I feel like there's nobody to talk to who understands the emotional issues, and from looking at the other sites for infertility I thought there might not be anybody who had always had it... So now I feel better knowing that you all have gone through the same things too. And I hope that if any body reads this and is going through the same things they will know they aren't on their own. I only wish I knew you in real life so we could talk.
    Anonymous 42789 Replies
    • October 15, 2010
    • 11:08 PM
    • 0
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  • I just wondered if you had managed to find any support groups or managed to set one up? Would be good to hear from anyone who wants to talk. My email is k8poole@hotmail.com
    Anonymous 42789 Replies
    • October 16, 2010
    • 02:25 PM
    • 0
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  • Hi All,I am in the same boat as all of you - and as I am now nearly 32, I have approached my consultant and applied for IVF funding. I only did this a couple of weeks ago, and have an egg donor who is a close friend of mine lined up, but having recently split with my boyfriend, I will need a sperm donor as well. Has anyone else applied for funding on this? I don't really know what to expect but as you can imagine, is all I can think about everytime the post hits the doormat!I am quite prepared to do this on my own now, and realise that if I don't at least find out, then I will spend my life wondering what if?I have been told that its normally £8k a cycle, with a 50% success rate - and he has written to the Health Authority, and failing a positive response from them, we can then approach the PCT. At that point, and if its a no, then I will know I have done what I can and try and get on with the rest of my life - easier said than done I'm sure.I am going to set up an email address for us so we can talk about it amongst ourselves - with others who understand the situation, there doesn't seem to be any support groups that I have found. Watch this space girls x
    Anonymous 42789 Replies
    • February 7, 2011
    • 09:43 AM
    • 0
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  • Wow - I've always thought it was only me. I was diagnosed at 17 back in 1985. It is comforting to know there are others out there. I feel for everyone of you as it is a difficult time and certainly took me years to come to terms with it. Unfortunately I remain childless -despite trying many times. There does not appear to be a reason for this so please don't be put off by my experience. We are going through the adoption route - if we get through the assessment. On a more positive thread - after many years I now am more comfortable within myself and no longer carry the shame and appauling body image. It ws a long road but I got there in the end.
    Anonymous 42789 Replies Flag this Response
  • Hello all, I always knew something was off about me and like many of you I was diagnosed at 16 with primary amenorrhea. Sadly, I was also misdiagnosed with Mike. To make a long story short it took me five doctor, one that was an endocrinologist, to discover that I suffered from Pure Gonad dysgenesis. It is a variation of Ovarian Dysgenesis. Seeing your posts, some putting my heart break and anguish into words gives me hope, I'm not alone. Please email me at thislife1984@gmail.com to talk.
    Anonymous 1 Replies Flag this Response
  • I am 41 was have a similar story. I would be nice to talk about this condition.
    Anonymous 1 Replies Flag this Response
  • My youngest daughter of 5 is 14 yrs. & has yet to start her period. My Aunt on my Mother's side didn't start hers until she was 17yrs old. From what I know about my family's medical history on both sides is the women began their periods as young as 8yrs & no older than 17yrs.I began mine at 10yrs. Should we be concerned or wait another 3 yrs to be sure?
    Anonymous 1 Replies
    • September 24, 2014
    • 09:38 PM
    • 0
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  • I am 66, my story is long. Aged 16, I still didn't have my period, was sent to a gynecologist who prescribed oestrogen for my 'undeveloped female organs'. Age 19, I went through many different tests with no result. I went from one gynecologist to the next, 50 all together. Age 30, I finally wanted children, was sent to hospital for a laparoscopy where they found out, I had no ovaries but a nice uterus. To cope with this news, I needed psychological help and opted for adoption. To prevent cancer, my uterus was removed. Aged 38 my son arrived, two years later I was diagnosed with severe osteoporosis. I have been on HRT since 20, plus Fosamax. I hate to take drugs, needed a while to accept, suffered many side effects from the 'Pill' until I found the right combination. Regular bone density tests show, I am quite balanced. My GP wants me to get off HRT. In her opinion it could cause heart attacks/ blood clots. Scary! I halved the dosis already, lost heaps of hair. What should I decide?
    Anonymous 1 Replies
    • January 10, 2015
    • 06:29 AM
    • 0
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  • Hello everyone. Well I think I have this too. Though i'm not sure as my gynecologist never really told us what term to use exactly. But from what I just read here. I heve this. In fact WE have this, my sister and I. When she was like 4years old my elder sister had to get inguinal hernies removed. When doing the x-rays, doctors found something starnge and that's when my parents knew we would never have those female stuff like reproduction/menstruation/puberty stuff like acne etc... Then I came to birth 2 years later and again, I got hernies too... So I got checked and they found out I had the same thing as my sister... They say it can only be genes... obviously. Cause it would be a lot of coincidences if it was not genes... I am now 22 years. I am really thinking of knowing a little bit more. Cause this is preventing me to live my life. Im still a virgin, scared to try anything just because idk what's all in, and not in there... Nice to know we're not alone...
    Anonymous 1 Replies Flag this Response
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