Monday, February 06, 2017

An infertile patient's secret thoughts, worries and fears

This is a guest post from a very thoughtful patient of ours.

It describes very eloquently the worries and fears which prey on an infertile patient's mind. It's very hard to discuss them with anyone, and bottling them up just makes things worse !

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Isn't it a paradox that when India and world's population is exploding at alarming rate; here I am ,struggling to have a single child for 5 long years and with no idea when the struggle will really end.

I am being treated at Malpani's and yesterday the doctor urged me to write down my thoughts... He said that many others are in same state and articulation  of our thoughts on paper may make us feel better. And in the process of doing so I may end up empathizing and helping others.

Right now, I am in no mood for doing any general good ... nor do i care which parts of it the doctor picks for his blog....  I have decided to write down each and every thing I feel and think these days in selfish interest and honest hope of feeling better myself.

For today, I am just going to list down all my irritating thoughts .... my worries . In no particular priority .. honestly all negative things (which is all I think I am left with.. to offer)!

1) the Age is passing  and the constant hollow feeling...

I will be 34 in May and have been married for 7 years. Being an MBA from one of  top schools ... i could put a lot of positive and constructive energy in building a noteworthy career for myself...BUT ...In reality, all my energies in these 5 crucial  years have been sucked up by this one issue of unexplained fertility. Waiting 60 long months for a resolution ... my life is stagnating !

I try to put the professional and personal things in different wagons but at end of the day, several failed attempts of being a mother are making my professional achievements seem hollow and meaningless.

2) I have healthy genes otherwise !

From the age I have memory ... I don't remember going to a doctor for any other reasons.
I don't think before marriage since childhood if I had been to our family doctor for more than 5 times.
I always had 1 other persistent health issue... sometimes I get breathless for which I take aerocort inhale once in month.
But other than that I don't get headaches .. no allergies .. no reactions...no aches no pains... I haven't seen a doctor for any other reason....
It's very irritating that I keep seeing fertility doctors and await a cure and find no solution for 5 years !

Sometimes I also fear that with so many fertility treatments most of which are hormonal . . I may be posing myself to a higher risk of cancer of some kind in future.

3) my ankle fracture :
We decided to start a family 1 year into marriage but I had an ankle fracture then. It took me 9 months to heal and I must have undergone 15 ankle X rays at that time(Nov 2010-Aug 2011)
I still carry some metal screws and rods in my left ankle which the orthopedic had asked me to have removed in August 2012. But I started visiting the gynacs since Nov 2011 month after month in the hope of getting pregnant and did not wish to expose my body to Xrays at early pregnancy stage. I have been postponing the surgery thinking I will do it while I am on maternity which unfortunately has not happened.

4) I will make a sick parent :
Had everything got resolved fast... I would have been in happy state of mind ... But 5 long years of constant tension...wait .. anxiety and negative feelings... I fear I will make a mentality sick parent to my child (for whom I am going through so many struggles)
Or with age I may lose the vigour or energy to parent a child.

5) the umpteen alternate therapies.....None of which seem to work !
I keep googling each day with a hope to find that one magical solution which will make things work for me ... but none of it has helped me as yet and I don't know which ones to pursue for how long !

I have experimented with acupuncture ... ayurveda .... massages ... spiritual chants ... music.. castor oil packs..hot showers ..chakra healing..random advices on diet... and none of it have given me results. I have quit after few tries and felt guilty many times of not being determined enough or not being a thorough believer... and have strayed and flipflopped too many times to know what went wrong ...

For now what i know is....I will continue with ayurveda massages as I feel relaxed after that.

5) Diet and PCOS
I love food and although i eat everything without complaints ...it's a torture to constantly follow some or other advice when it comes to food. Be it portions or variety.... I feel a constant pressure while eating as it may add to my weight which is linked to PCOS or increase my body heat which as per ayurveda is not good for conception.

For example : I loved sea food( clams .. prawns, shellfish , crabs etc.) ... but I don't remember last when I have eaten it to my heart's content in last 5 years... Sea food is supposed to increase body temperature as per ayurveda


6) appearance and advices
I am 70 kgs and that provides everyone an opportunity to tell me exactly what I should be eating to be slimmer....
And since I don't have a child  7 years into marriage ... the itch to advice me multiplies many folds and its everyone's birthright !

I fake ultra confidence to scare these well-wishers away but they find ways  to  whisper all sorts of advice to my mother or MIL which then is added to "our invisible rule book to get pregnant faster".... this book haunts me for days each month when I have learnt my pregnancy hasn't worked.

6) were my ovaries dysfunctional  or is my  uterus dysfunctional ?
I was detected with PCOS in Nov 2011 but was told it's not severe and many ladies concieve with no troubles in spite of acute PCOD.
So I kept thinking it's my ovaries who need to produce good quality eggs...

My AMH is above 4 (i.e. 1 level below perfect) which says I am not menopausal...

And when you do IVF .. ovaries anyways don't have a role beyond producing many good quality eggs at the start.

My uterine lining wasn't growing for 9 months post embryos were formed in 2nd fresh IVF cycle. And when it grew to the doctor's satisfaction and we did a transfer.. I got pregnant with ectopic. This the highest BHCG i have had :  6000 levels and i saw it on ultrasound too. Which means the one embryo which managed to travel to a tube implanted well. My tubes were fertile and embryo was good.
But what happened to the one embryo which remained in the uterus... I think that got killed...  same way the one embryo we transferred last month too got killed. Also the 5 embryos we transferred 2 years back in my first IVF fresh and frozen cycles have got killed.
Now my analysis says the real issue is that my uterus is dysfunctional.
And for many years in the past .. I kept assuming PCOS was the big issue... not knowing the real issue wasted around 4 years my crucial fertile age.

7) measuring the period flow :
For a few months in the past .. I haven't got my periods witout medication... I have taken medicines such as mesoprostol etc which are given to empty uterus contents in case of pregnant women. It is the last thing in oral medicines which can be given to abort pregnancy.

That was the only time and after ectopic pregnancy I had good flow in periods. I.e. 3 days of flow.

Else these days I get flow only on day 2.ie only for 1 day.
I am not sure whether that's causing my lining to not grow properly for the next cycle.

8) my 64 month long infertility ordeal
Oct 2011: went to doc for a random missed period and wish to start family
Put on progynova and Gestin treatment for 4 months with oral multivitamins to help concieve
Nov 2011 : sonography showed 2 intramural fibroids and PCOS
Apr 2012 : histosalphingography
Tubes found patent
Nov 2012: 2 IUIs done.. advised IVF but scared so changed gynac
Feb 2013 : laproscopy done with PCOD drilling done
Mar to Nov 2013 : 5 IUIs done advised IVF again by the doctor
Nov 2013 : did acupuncture + ayurveda oral + ayurveda massages
Jan 2014 : clinical pregnancy highest BHCG 952.
Jun 2014 : Hysteroscopy done. Some infection at the mouth of the uterus freezed and cleaned using cryo****(don't remember the term)
Sept 2014 : first IVF fresh cycle (BHCG 150)
Mar 2015: frozen cycle (BHCG 50)
Contemplating doctor change
Visited dr indira hinduja.. Kiran Coelho ... rediscussed if fibroid removal is an option. But refused by both . Kiran agreed hesitantly and with risk caveats .

Jul 2015 : landed @ Malpanis ..given vit D / DhEA / etc
Oct 2015 : ovum retrieved . 21 eggs 5 d5 embryos formed
Ovaries enlarged so fresh cycle canceled.
Dec 2015 - July 2016 : lining unsatisfactory to do a FET
July 2016: FET with 2 embryos. Ectopic BHCG: 6000
Jan 2017: FET 1 embryo . BHCG:0

9) vitamin D and B12 deficiencies : whenever I have tested these in interim .. I have been deficient. Not sure if this is causing the failure to implantation.

10) the toll on my marriage and other responsibilities : We seem to be blaming each other for small issues these days.
We hardly have sex and don't seem to be attracted to each other.
We want to do it some times but think time / ovulation .. basically it's hardly  mood driven and very infrequently spontaneous.

Also our families are so consumed by this problem that my in laws or parents don't discuss their health issues with us thinking they will burden us more .. but this attitude makes us further guilty of being selfish and not being there for our parents when they need us.

11) social withdrawal : we wish everyone good but do not enjoy being at birthday parties or baby showers. We do not like outings where we know there would be kids. This is taking us away from some of our good friends / cousins who we use to hang out with regularly.

12) gods and abstinence : I have been sincerely worshipping around 26 gods whom I use to not even know existed. I am abstaining/following foods /customs which promise faster results.

13) at astrologer's mercy : an astrologer who has good repute in our family has predicted we will have a child. According to him , it's time we do. In dire states , I keep telling this to myself and being hopeful.















3 comments:

  1. Its been a while since i read posts on this blog, i stumbled on it today only to realize that this story mirrors my situation. I have been trying for 5 years and failed miserably so far. 4 miscarriages. 2 pregnancies on my own. The first D and C for a missed miscarriage gave me Asherman's which even after correcting resulted in one ectopic, one interstitial and another chemical. The last two were from IVF. I even went through the route of gestational surrogate in India las summer. The surrogate wasn't even pregnant. After coming back to US, i did another round of IVF. I have 6 day 5 embryos and i am waiting fro FET. The only problem that was diagnosed was uterine scarring which was removed successfully in couple of hysteroscopies. There seems to be no issues, expect that the embryos doesn't implant in the uterus. All the RPL came back negative. No issues at all. One of the doctor advised to get a ERA testing just for the sake of completeness. I have a Ph.D. in molecular biology and i the only way i keep giving myself faith is that there is always light at the end of tunnel. In my experience, your experiment may fail multiple times, but one day it has to succeed since we are not attempting to do something that has never been done before.

    Good Luck!

    ReplyDelete
    Replies
    1. Dear Swapna,

      Thanks so much for sharing !

      I agree it can be a difficult ride !

      Dr Aniruddha Malpani
      Malpani Infertility Clinic, Jamuna Sagar, SBS Road, Colaba
      Mumbai 400 005. India

      Clinic Mobile: 9867441589

      Tel: 91-22-22151065, 22151066, 2218 3270, 65527073

      Helping you to build your family !


      Watch our infertility cartoon film at http://www.ivfindia.com

      You can add a google review for us at https://plus.google.com/102706636605134081909/about


      Read our book, How to Have a Baby - A Guide for the Infertile Couple,
      online at www.DrMalpani.com !


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  2. Anonymous9:33 AM

    Hi There
    I was moved by your post and could see myself in you and all the struggles I went through in my fertility journey. I want to tell you that we received our miracle baby as a precious gift of God on our 10th marriage anniversary. We were blessed to have found Dr. Malpani and our dreams came true.
    Your post particularly made me rethink how I used to think, i would say 5-6 yrs into my fertility journey. I used to count that I have failed for 48, 64 months and finally after 100 months of failure I conceived. I used to be pretty harsh with myself, never enjoyed my career success, I saw baby as my identity and felt pained when my bday was coming and felt that I would be a miserable mom.
    I would say I would have been that way, had I not met a wonderful angel of my life "Julia Indichova" and her work "FertileHeart.com" and her books Fertile Female. I would say my life turned 360 degrees after ardently working with the fertileheart tools. Why should I blame my body for the failures? Why can't I be compassionate with myself? What if i conceive at age 40,so what? what are we trying to race against? How can i get out of the identify taboo? today I might be desperate for a baby, once baby arrives, there are lot of folks desperate for 2nd baby, then babies education and the chain never breaks. These are some ground breaking things I realized and had I not embraced the fertileheart work, I wouldn't have chosen gotten pregnant as it really grounded me very much, I realized I need to let go of my control and realize what is in my control vs what is not and to be compassionate, trust, and love 1st my body baby. You seem to be a very intelligent person. I would strongly recommend you to read Fertile Female once. If the work resonates with you, I bet it will be a life changer. Its all about working through our emotions, especially being on this rolla coaster ride.
    My IVF trip to Dr. Malpani's clinic was like a holiday for us. We travelled all the way to India and had a good vacation in Mumbai. This is how I would describe my IVF trip.
    Good luck to you and hang in there, the baby is just in the corner.

    ReplyDelete

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