Finding the courage to discuss endometriosis symptoms

In the last years I have been worried about endometriosis but when I tried to talk about it with my old doctors they cut me off saying that I had no reason to believe I had it. I didn’t insist because I was too ashamed to talk about it anyway. The thing is, I have gone through plenty of website discussing endometriosis and I believe I have reasons to worry. 

After so many failed cycles, I finally decided it was time to talk. I own a big thank you to a friend who was kind enough to share her own I-may-die-of-shame experience and gave me the final push I needed. Really, thank you!

This doctor finally listened. Or rather, he read: since I was too ashamed to talk about glamorous symptoms , I ended up writing a list and handing it to him. My list of endometriosis symptoms is as follows:

  • Painful, heavy and very irregular periods, often with clots 
  • Pain in the lower abdomen, pelvis and lower back
  • Diarrhea during periods
  • Painful bowel movements right before and during periods
  • Occasional bleeding from back passage
  • Often cramps around back passage right before periods (so strong I generally cannot move)
  • ‘Spotting’ or bleeding between periods
  • Pain during sex in some positions
  • Infertility (of course!)

Sorry I know this is TMI but I am writing this down so if others have the same and read this list, they know they are not alone.

The gynecologist agrees with me that I may have endometriosis and told me to get an MRI. As IVF is the solution for endometriosis and I am already doing it, he thinks that it’s not worth doing a laparoscopy for now. 

Any thoughts from endometriosis experts and sufferers?

Other than this endometriosis discussion, we’ll go ahead with another frozen transfer. I’ll start the meds to induce my period as soon as I feel ready and I think the FET will be sometime between late September and early October. After all the failures this year, I can’t feel enthusiastic about it. But we can only keep trying.. 

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ありがとう – Thank you Japan!

I got back from Japan a few days ago and I’m still in awe at this wonderful trip! I loved everything: the calm madness of Tokyo, the quietness of the woods, the beauty of the temples, the perfect harmony of Japanese gardens, the incredible kindness of the Japanese people, the food, the unexpected discoveries, the traditions, the old and the new, the countless shades of green in the forests, the sun light coming through maple and ginkgo tree leaves, the hot spring baths, the karaoke singing Japanese songs after drinking way too much… 

We walked and biked around loads trying to see and experience as much as possible. I loved getting to the evening with my feet on fire or sore legs. It helped regaining possession of my body: little by little I had no more sore boobs, nausea, or tummy pains. I lost the weight I had gained with treatments and I’m now feeling really well. 

I wish my mind was as quick as my body though.. I spent the first week in Japan waking up at 4 AM in tears. I blamed it on jet lag and decided to cure it with jogging (it’s amazing how many people go jogging or walking at 5 AM in Japan!). Things got better as days went by but sadness and panic often came back when we stopped running around. The worst was when we went to these beautiful onsen (hot springs): I was sitting in this outdoor bath, with a wonderful view on the maple trees and the soothing noise of a small river, but all I could think about was dead embryos, doctors, tests, decisions to be made, my parents getting old and, above all, the fear of never being a mum..

A friend reminded me that grief comes in waves and you just need to wait for the wave to go away. I guess that I loved Japan so much that I made this wave a tsunami… But even tsunamis pass and I’m really hoping this one will be gone soon.. 

Anyways, enough with the whining and time for some pictures now! Here is a small selection: 10 out of the 2000 I have.. yes I am an addict!

A huge lake of lotus flowers at Ueno Park in Tokyo. The lotus flowers are much taller than me.. 

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Our fortunes up outside a temple. My husband got “Very bad luck”, I got “The last fortune”, which is even worse.. According to Japan our wishes will not come true..

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The crowd at Shibuya crossing in Tokyo

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The golden Pavillion in Kyoto

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Bamboo forest in Kyoto

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Torii at the Fujimi Inari temple in Kyoto. We went for the full walk/hike: I don’t think I have ever gone up so many steps my whole life! It was definitely worth it!!

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Wishes up the trees for the Tanabata festival in Kyoto

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The huge torii in the water in the Miyagima Island.

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One of the many super cute Buddhas we saw

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Maple trees in the summer light in Kamakura

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My BFN and I are off to Japan

I was supposed to test tomorrow but since I’m catching a flight to Japan tonight I decided it would be safer to get at least an idea of whether I should pack tampons or drugs.

My beta was 1.

I will pack tampons.

You know how I started this cycle in pure pessimism? Well, that only lasted about a week, then my super sore boobs made me believe that there was some hope. Except I started doubting of having any chances in the last couple of days when my boobs were not sore anymore and I started having period pains.

The truth is that all this is nothing more than a lot of shit that goes on in my head because there has probably been absolutely nothing going on down there.

This is unexpectedly probably the worst heartbreak I have ever had. Pessimism doesn’t work any better than optimism. But I need to pull myself together and go pack my stuff so I don’t miss my fight. I need to find the strength to present at this conference which is way too high level for me and my current state of mind. And I need to survive today and the next 5 days without getting a hug from my husband.

I will probably be offline for the next weeks. I know lots of people are cycling or have big days coming up. I wish you all loads of luck and success! Sorry I won’t be around.

To the ones who like me will just take the rest of the summer to recover and try to have fun, I hope we’ll all feel better at the end of the summer. I’ll think of you so I feel less lonely while I drink like an alcoholic on the flight tonight.

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Jessica’s fertility proust questionnaire

Last month Jessica Hepburn, the writer of the wonderful book “The Pursuit of Motherhood”, asked me whether I wanted to answer to her fertility Proust questionnaire.

Of course I said yes! I love questionnaires!

Thinking through the questions was fun. Though challenging at times. For instance, I had no idea who Holly Willoughby was (thanks to my Dear Peruvian Reader – who is actually British – for giving me a summary).

I particularly liked a few of the questions:

  • What is your idea of perfect happiness? While I gave a single answer of what perfect happiness looks like, this question made me realise that there are so many things that make me happy and that I had so many moments of happiness this year. From lying on the grass in a sunny day, to going for a walk to take pictures, to cuddling my kitty or simply ordering Indian food and watching a movie under the blanket with my husband.
  • What food is evocative of childhood for you? I answered watermelon but this question made me think of all the wonderful things my grandmas used to cook for me (God, I miss my grandparents!). The orange sponge cake, panna cotta, fried fish, squid salad… mmmm… I wish I wasn’t on a diet so I could try to make them myself!
  • Which bit of you would you most want your children to inherit? This question, as well as a few others, made me realise how much I’ve changed through this infertility journey. Years ago I would have probably answered my (big brown) eyes. Now I answered something linked to my personality. That’s something I know I could pass on to biological children but also adopted ones or children coming from donor eggs. After all when I’m asked in which way I resemble my parents I always think of personality or values before physical characteristics.

Oh, and if you’re wondering what the heck I’m doing in the picture, it’s a fertility dance with the dolmens for me and my cycle buddies. I am a big believer in the magic powers of Celtic culture! It didn’t work for me but it did for a few of the others. So it was well worth doing!

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Infertility coming out at work (part 2)

I had my frozen transfer earlier this week: two day-2 embies transferred with no issues. Since the transfer I have been feeling very tired, stressed and emotional. I feel nauseous (due either to the patches or progesterone) and have nightmares at night (apparently because I’m taking steroids). So I’m really not in my best shape. The kitty waking me up in the middle of the night is not helping either.

I have done a lot of thinking lately and, since after 3 years of IVFing my situation is becoming more obvious at work, I decided to tell the big boss about it. A few months ago I had to tell my line manager. I hadn’t planned to but had to justify myself after crying in his office: he brought up my (nonexistent) pregnancy during my performance reviews and I couldn’t avoid crying as I had just had bad news. This time it just came from me. I’m not sure why all of a sudden it became so necessary for me to tell him. I guess I have been worried about absences and lower performance at work.

Anyways, today I went to see him and told him broadly what has been going on. I tried my best to avoid being emotional but didn’t manage and ended up having to talk slowly while holding back tears (yey me, that’s professional). He wasn’t just supportive and reassuring but also really adorable.

He told me I shouldn’t worry about the absences, that if I need to I can do more tele work too. He said not to worry about my performance either, that I have been doing a great job. He did also say that he had been worried about me and wanting to ask, but thought that it was better if it came from me (definitely!). This made me realise that it is obvious to other people that I am not doing well. I really need to do a better job at looking alright at work.

I don’t know why but I’m being very emotional about this, crying as I write.. I’m touched, relieved and grateful to have such a kind boss. Maybe it would have been better to talk to him when I was off drugs and less exhausted from months of treatments. But maybe I needed this now. In any case, it’s done and I’m happy I did it.

grateful

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Lost in beta hCG translation?

My last failed cycle left me seriously down. Nevertheless there is a unique advantage from a failed cycle: I get my period. This is a given for most people but not for me: I normally need to take meds for a couple of weeks, which generally leaves me exhausted before I start a cycle.

So, given that I had a period, that my lining and blood work look good and, above all, that my husband is really keen on it, we decided today that we’ll do a FET on this cycle. Unlike last time, I don’t have the energy to be optimistic and positive etc. I am going with the flow, following my husband’s request but going for a fully pessimistic approach, which is all more natural to a real Pisces like me.

There are however a few practical problems with this cycle. First my husband got to know yesterday that he will have to leave for a week. So I will be doing everything on my own. I was surprised to see his sadness when he thought we had to wait to the fall to cycle. Besides the annoying paper work needed for me to do the FET without him, this is not that a big deal.

More importantly, I have agreed to a work trip to Japan (followed by some time off) and cannot cancel now. The problem is that I may not be able to do the beta hCG test before leaving. The gynecologist said it’s easy to do it in Japan but google was of no help. Having noticed in my blog’s stats that I have a reader from Japan, I’d like to ask for help to my Japanese reader/reader in Japan (as well as anyone else): do you have any idea of where and how I could get a beta hCG test done in Yokohama or Tokyo? Thanks in advance to anyone who can help!

This will be fun. I’ll be like Scarlett except lost in the translation of a beta..

Lost in translation

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For ten minutes

Per-dieci-minutiA few weeks ago I read a wonderful book I want to tell you about. Its called “For ten minutes” by Chiara Gambareale (unfortunately I don’t think it’s been translated to other languages). But it doesn’t matter because it’s the idea of the book I want to talk about. The main character is a girl who has lost herself and her interest in life after being left by her husband and lost her job.

After months of useless therapy sessions the psychologist is getting nowhere and decides to ask her to do something she has never done for ten minutes every day for a month.

“Would you like to play a game?”
“Which one, Doctor?”
“For a month, for ten minutes a day, do something that you have never done before. Anything.”
“What does it mean?”
“Just do something, whatever you want. But it must be something you have never done”
“And then, Doctor, what happens in the end? Will I be normal again?”

I love that question: will I be normal again? Will I have my life back? While initially skeptical the girl starts trying many things from putting on bright nail varnish to hip hop dancing, cross stitching, cooking or playing the violin. Little by little she starts seeing some light and a life besides her ex: she starts seeing a new world because she is new.

I can see a lot of me in her. Being left by the love of your life or losing your job, like childlessness (when we desire a child), can lead us to feel too far from the life we pictured in our heads. I don’t know how feasible it is to do something new every day for ten minutes but I wish I had had this idea when I was in a very dark place. It may have helped getting out of it sooner.

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