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  1. #1
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    Default Battered but NOT Beaten... seeking advice and similar stories with +ve outcomes

    I am seeking some stories of hope and advice for some “out of the box” fertility treatments. I am a recently married 28.5 y/o and my DH 34. We have been TTC since Feb 2011 without even an inkling of success.

    I have several surgeries, 10 in total, two were TOPs with my ex partner (please no judgement on this, you cannot make me feel any more guilt or hatred towards myself that I already feel). I was diagnosed with endometriosis and a unicornuate uterus in 2010 after emergency surgery that removed my right ovary. After this surgery I was told my chances for pregnancy where not impossible but would be difficult. So at this stage, I knew I had endometriosis, half a uterus, one ovary, one fallopian tube. However after surgery to assess my sub fertility in April I was also diagnosed with acute cervical stenosis and damage to my only fallopian tube. The hysteroscopy that I was scheduled was not conducted due to my “deformed cervix” and the surgeon was unable to get through. I was told that the only “reasonable option” is IVF in order to achieve pregnancy.

    My DH has had S/A that have been normal and satisfactory so the burden and problem has fallen directly on my shoulders.

    I have spent thousands of dollars on surgery, tests, ultrasounds and naturopathy treatment for my endometriosis to be told that none of it has helped and that I now face intervention more surgery and more tests with a high chance of getting the result that will not be able to carry a baby.

    Further to all of this, a recent 3D ultrasound showed a massive endometreoma that measures 54x44x49mm. The news of this left me totally devastated and feeling even more hopeless. 2 days after the US I had another appointment for a second opinion as I am not one to settle on the word of one person. This specialist performed another US and showed that there was ovarian tissue present (a contradiction to what I was told during the 3D scan) and he told me that my bloods showed my AHA level although lower than usual was still good and bloods showed that my body was ovulating and doing it well. This specialist also recommended IVF treatment and referred me to a FS, a Prof and apparently top of his profession....

    I saw this Prof on Thursday and I found him nothing but negative. He informed me that my situation was extremely difficult and he did not want me to proceed with IVF until I had more surgery to remove the endometrioma. He then proceeded to tell me that this surgery risks massive complications and a 1 in 5 chance of complete sterilisation and that once/ if this happened my only option was donor eggs. (He did not appreciate me telling him to f**k off at this point).

    He then referred me on to ANOTHER specialist (let’s call him specialist number 4) because Prof FS is not a surgeon?! So I managed to get into see the surgeon yesterday (a fluke because otherwise I was waiting till the end of October). This Surgeon pretty much discounted or contradicted nearly every single point that the FS said and gave me 4 options:

    1. Surgery that WILL damage and possibly kill my only ovary and may leave me with a colostomy bag and/or sterile;
    2. Proceed with IVF that has a high likely hood of failure and wasting a great deal of money and during stimulation risk increasing the size on the endometrioma, further damaging my ovary;
    3. Do nothing, try for Spont pregnancy and risk that the endometrioma grows and has a very low chance of success; or
    4. Start a round of Zolodex for 3 months to attempt to shrink the size of the endometrioma which will put me into simulated menopause and could do nothing then go straight to IVF treatment.

    Again I am not one to take any one opinion as truth and oath. I do not trust doctors or surgeons. I have only ever followed their directions and treatments with leaving me even more broken than I was in the first place. The last surgery I was supposed to lower my levels of pain... this has worked in to the adverse and has increased my pain levels. Apparently I am the 1 out of 5 people that this can happen to (hence my huge hesitation at having more surgery that has a 1 in 5 chance of leaving me sterile).

    I have made another appointment with another FS who I will see next week to get another opinion and further advice regarding the use of Zoladex as I have not managed to find any info regarding the long term effects of this drug.

    Has anyone used Zoladex to shrink and endometrioma with any success? And then gone straight on to IVF with success?

    Has anyone tried a natural collection rather than an IVF collection due to endometrioma with any success?

    I am here for some encouragement and to know that my situation is not the only one out there. I know my case is unique and challenging but I am sick of feeling hopeless and a demented freak. Also I want tips on what else to try. I’m looking for suggestions that are “out of the box” that I can research and find out if they will work for me.

    Any help is greatly appreciated.

  2. #2
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    I have no advice as my fertility issues don't even hold a flame to yours

    But I can recommend an awesome FS (also top of his field) if you're in Melbourne? Against all odds he managed to get me pregnant 1st cycle

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    Struggle4me  (02-08-2012)

  4. #3
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    I'm sorry I have no advice, or even a smidgen of experience with your difficulties, just wanted to say that you're a strong person to have managed it all, I'm impressed and I dearly hope you find some success however it comes.

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    Struggle4me  (02-08-2012)

  6. #4
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    Thank you for the support. I have continually been told that I am one of the most difficult cases around (One day doctors will learn that this is the stuff that I DON'T want to hear!).

    I have had to take some time off work to "cope" with it all, I am finding that my reactions to things are a bit over the top and since I work in customer service my tolerance level for stupid people is quite low.

    I live in Regional WA so Melbourne is a little bit far away for me.

    Thank you again, I am hoping for my own little miracle.

  7. #5
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    An update is in order....(maybe more of a vent)...

    I found another FS, one that loves hard cases and only offers positive responses rather than putting hands in the air, rolling eyes and says "it's all too hard".

    I started my first round of IVF 1st September, I went straight to IVF becasue FS said he saw no other Tx option would have any success. I think that I coped really well. I told people that we are doing IVF because I did not want the added stress of this huge secret ontop of everything else.

    Bearing in mind I only have 1 ovary that is badly affected by a massive endo, my day 12 scan only showed 2 follicles, I was devistated, the nurse was kind and said it only takes 1 but still felt like a bit of a failure. I called my DH who drove 650km to be with me for the next scan on D14 and then they counted 7 follicles (typical DH must think I am a drama queen, everything he shows up everything is OK and I look like the panicing crazy lady). I had EPU 3 days later and was pleasantly surprised when my FS managed to get 9 eggs!

    This excitement turned to dissapointment when they next day I was told that only 1 managed to fertilise. They dont know why this happened, the swimmers where doing what they were suppose to and the eggs were good but nothing happened and said next time its ICSI.

    Because we only got 1 embryo they ordered a D3 transfer. We got told at ET we had a perfect embryo, grade A, eight cell, I was so happy that our junk could at least make an embryo.

    So the FS famous last words were "this is the easy bit".... Its not everyday you get to prove a specialist wrong and make them eat their words but I managed to (TWICE!). So after they tried for 20 mins to get through my cervix the wonderful Dr asked how much more I could take, it worked out to be about 3 more mins. The best way I can describe it was getting a pap-smear with a drill bit! I have experianced pain and discomfort but I have never wanted to kick a dr in the head quite so much as that moment. So ET fail... attempt one.

    So I was admitted in to day surgery the next morning for ET attempt #2. This time it was my FS doing the transfer and his words were "I have not failed to do this in 32 years".... again some famous last words that I managed to get him to eat. After an hour of trying with every instrument he had and me happily unconscious he could not find my uterus, ET fail #2.

    So my poor DH was left to break the news to me. The FS came about 20 mins later to talk and his first words are "never in 32 year...", I told him in no uncertain terms that that comment does not make me feel better at all. He said that I had severe cervical stenoisis and he was surpirsed that I even get AF. He said that a combitation of my endo, misshappened uterus and previous terminations have left my cervix very scarred and askew. So he wants to do more surgery to try and dilate my cervix with meds and they try to do a hysteroscopy to find out what is going on.

    What I am upset about is that the FS knew about my stenosis and had attempted a "fake transfer" at EPU which also failed. I was not told about this until failed attempt #2. Im frustrated I feel like I have come all of this way, I have had road blocks at every single stage of our attempts to conceive, and I to get so close... to get told you are the hardest person your FS has come across in 32 years!!! *BIG FAT LOUD SWEAR WORDS*

    So our embryo is good,a perfect blastocyst and is now frozen. This is the good news the only good news I get to take out of my first IVF cycle. Small miracles.

    I feel like im living the old saying "fall down 7 times, stand up 8", Not sure how many times I can get kicked down and stand back up again.

    *end rant*

  8. #6
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    Just want to wish you all the best for a positive outcome.

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    Struggle4me  (23-09-2012)

  10. #7
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    So I saw my FS yesterday post my failed ET. I wish I could say it ended with a positive outcome. I wish I could, it didn't. It ended with him saying that I was the hardest case he had come across in 32 year and he had never seen anyone of my age with so many problems and such and extensive surgical history.

    He believes that I may have Asherman's Syndrome caused by my last D&C for TOP (What I have been saying for a long long time and no one cared to listen) however he needs me to have YET ANOTHER detailed US that I have to wait until late November to get this done.

    He also said my uterus is frozen and folded back against my rectum and twisted left and my canal is like a "kinked hose" which is why he could not find a passage into my uterus.

    So the next step after my US is a choice of two options
    1. Surgery to attempt to dilate my cervix and do a hysteroscopy of canal and uterus (If there is indeed a cavity)
    2. Reconstructive surgery to try to release my uterus, reconstruct my cervix and canal and remove endometrioma and "try" to revert my pelvis to as "normal" as possible (That could leave me sterile and requiring a hysterectomy and a colostomy bag).

    Andddd.... if all else fails then my only option is surrogacy that or me is not an option. I was robbed of a pregnancy twice by an abusive, controlling person and all I want is to carry a baby of my own and have the joy of feeling it grow and develop within me. It is selfish but I have given so much of myself already. I had 2 TOPs that was against my will, I did surgery that was against my will, I did IVF that failed that was against my will. I don't know how much more of myself I can give up before I become a shadow of myself and my beliefs. If I stand for nothing, I will fall for anything.

    I don't know if my in drive to be a mother I can keep sacrificing so much of myself and what I believe.

    I feel like my journey is and fight is coming to and end and that I will have to face the harsh reality that I will not be able to become a mother. I am continually being told that I am a strong person but each time I am pushed down, standing is becoming harder.

  11. #8
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    Hi hun i also have UU. I have been TTC with no success. one possible chemical pregnancy but was not proven.
    Me and my husband started trying when i was 16 (yup we started young) I am now 20 (almost 21).
    I am the same as you with the unicornuate uterus. I have 1 kidney. half the uterus (to the left) 1 tube (left) but both ovaries. my right tube was taken out because it was not formed and attached to my uterus.
    I have had 5-7 (i cant keep track) surgeries for diff things.
    I also have irregular periods, dysmenoreaha (i know i spelt that wrong but its disabling period pain that has made me vomit, pass out and end up in hospital quite often) i have my fair share of scar tissue from all the surgery. and im pretty sure i dont ovulate ( due to my struggle with cysts, Pcos was ruled out as im not overweight at all im 5'2 and 45kg and my hormones are normal)

    I was just referred to next generation fertility and am worried they will jump straight into IVF and i dont want that i want to try clomid 1st. There is a yahoo group for UU girls. so im praying they let me try clomid if not im not going back there.

  12. #9
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    Hey honey,

    Ok so we are now UU buddies. I am not too sure about a UU yahoo group, the problem with UU is a lot of women with UUs do not know they have them unless they have problems and usually a UU is coincidental finding to a primary issue. I have conceived before and there are lots of women out there with UU that have had successful pregnancies with the same condition and are not diagnosed until they have a hysterectomy. A UU should not be the only cause of your troubles.

    I am sorry to hear of your troubles xx It is not fair and I am sure you are feeling like me and are sick of hearing "oh but you are young...." In a way it is a blessing you have found this out now and not later. Does not help but trust me it is good to have found out there is a problem now rather when it can be amplified with age. (I know, I know it still does not make you feel better... sorry)

    The first thing I want to say is that you have to be your own advocate in your baby making quest. If you do not want to go straight to IVF then don't. If you don't want more surgery then don't have it.

    There are other test that can be done that can give a lot of information before you go under the knife. More surgery = more scars so unless they give you a really good reason to cut, say no. Surgeons instincts are to cut to heal...often they can be one-eyed about a situation and it is up to you to make them test their medical knowledge to find an alternative.

    Secondly DO NOT SETTLE FOR JUST ANY DOCTOR!! I have told several doctors to "F" off and have walked out on them for trying to pressure me into doing something I was not comfortable with, You have to be confident your doctor is doing the best for you. I have seen 10 doctors and have now had 13 surgeries (several of them pointless with nothing gained) it was only the last 2 doctors and surgeries where I got any answers and only the last where I have received any good news. I am a stubborn cow and have learnt that doctors make mistakes, I live with the scars they give me so they are going to hear about them. Do not let them intimidate you. Go in prepared and if you don't like what they tell you, find someone else.

    You have to think of it all mathematically and do the appropriate tests...
    Are you ovulating? (blood test, charting and/orovulation tests)
    Can the egg get through the fallopian tube and can the sperm get to the egg? (HSG, HyCoSy)
    Can the embryo implant? (Hysteroscopy to check lining health)
    If yes to all of these then:
    Is your husband's sperm healthy? (Semen Analysis & DNA Fragmentation Test)

    Charting is something you can do yourself and it will show you if you are ovulating. All you need is a chart and an ovulation thermometer. You take your temperature each morning at the same time starting on day 1 of your period. The temperature will start low and then at ovulation your temperature will spike and continue to stay high until your period starts again or it will stay high if you are pregnant. It is a good way to see if you are ovulating doctor are often happy to see them because they can give them alot of info. This website explains it and you can do it all online... http://www.fertilityfriend.com/p/163...FQE5pgodbX4Abw

    You need to get the basic answers first before you go on to do anything IVF related. Even ask the clinic to track your cycle, this will show that your hormone levels are OK, you are ovulating and that your progesterone levels are getting high enough to sustain a pregnancy.

    Sorry if this is too much info but I hope that it helps. It can all be overwhelming and too much to handle at times but remember to fight for your babies and do not do anything you are not comfortable with.

    xxxx Megan


 

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