Friday, February 3, 2012

Uterine Woes

Since I last wrote, we have been running around planning for a sort of last minute trip to the US. The night before our trip to Tasmania, we got appointment with a doctor and flights to the US booked. At around 4am. We left the next day for 2 weeks, came back for four days then ran off to Bali and then had about three weeks before we left. It was nutty and a half.

I'm guessing that you already know about this if you read my blog, since it doesn't import into Facebook anymore (so I'm actually not sure anyone is left reading my blog?), but since this is also a journal of our experience, I'll explain.

I gave birth to Samara in October 2010 via c-section. It was nuts and I bled a lot right after, like a lot, and it didn't stop for a while. After calling the doctor multiple times in, oh, six weeks, and them saying it was fine and normal, and also rushing to emergency care a few times, they finally told me it was time to come in for my six weeks postpartum appointment. In a scan the doc saw a big piece of something. I had a D&C in Nov. During this D&C, the doc went in blindly (i.e. with no camera or anything so he can see what he's doing - as in all D&Cs), he scraped the crap out of my uterus to get out a 9 cm x 9 cm piece of placenta that had been left inside. 9 x 9. Left inside after a C SECTION (I'm pissed). He later told me it was a satellite (extra?) placenta, which is not common, so he didn't know to do a sweep with his hand before he sewed me back up after taking out Sam. I asked if there was any way this would affect my future fertility. He basically laughed and said no way.

Come June when I ran out of breastmilk in Bangladesh (no joke - sorry for the TMI if that's gross). I expected to get a period, and I never did. In July, at Michigania, I had this crazy pain in my abdomen for three days. Hurt to walk, or really do anything. I asked all the docs at camp and no one had any ideas, other than that it might be cramps for a period or that I should eat things that make me poop.

25 days later, in August, I had crazy pain in my abdomen. I called the doc and went in. He said, sometimes it just takes time to get a period - let's wait until October. 25 days later in September I got crazy pain. In October I went back to the doc and he told me I probably wasn't getting my period because my hormones weren't regulated yet. He put me on a 5 day dose of progesterone. I went back 10 days later - nothing happened. He then put me on a 21 day dose of estrogen. Not only did I not get my period, but I had the most pain I have ever had in my life - I was in bed, with a fever, unable to move and scared I was going to die - literally. I even made Matt come home from a party.

I finally went and got a second opinion. The second doc, Dr. Kumar, wrote down "Asherman's Syndrome" on a piece of paper and explained that my uterus had probably sealed together from all the scraping from the D&C. I looked it up, cried a lot, freaked out that we're never having kids again (which isn't necessarily true) and that I would be in pain for the rest of my life, got it together and decided to find the best uterus surgeon in Singapore. I asked around, and I ended up going to four people. For a mere $300, they each evaluated me with the same conclusion. Each said they are confident to do this, and that they do it maybe 2 times per year.

I did more research and I learned that the success of the surgery - to get my body working again and stop the pain, and also for future fertility (which is important to us) - completely depends on the experience of the surgeon and the severity of the condition. You can't know the severity until they deal with it, but I can know the experience of the surgeon. The websites also said that all docs will say that they can deal with this, but that you should go to the best of the best if you want success. We started asking around in the US and we came up with a few names, fairly quickly. Now that I'm in the Asherman's community, I know we came up with 2 of the top 6 doctors. One, in Boston, #1, actually, Dr. Keith Isaacson, was my top choice, but it was too difficult to deal with their office when you're 13 hours ahead. I was up until 4am for multiple nights in a row, and I still couldn't reach the right person or get them to just schedule an appointment for me. I moved to my 2nd choice, Dr. Glenn Schattman, and his assistant Una was amazingly helpful. Over the phone she explained the process and exactly how it would all work. He works in NY Presbyterian Hospital, and they have an office for people coming from abroad, and they helped me get a sense of the cost and helped me understand the logistics. We booked tickets with enough time for me to be here and heal, go for my immediate follow up visits, and then go back to Singapore.

So, 20 Jan, Matt, Sam and I flew off to New York. We were on the A380, which seriously made a difference, so the 24 hour journey wasn't even that bad. Sam played with other kids, played in the back area, up and down the steps and there was plenty of space. She even slept on us (unheard of). We arrived in New York and immediately were basked in generosity of friends and family. We were picked up at the airport - in the SNOW (first time in five years...) - by Eli, and taken to Matt's cousins, Jeff, Robin and kids in Briarcliff Manor in Westchester County, north of the city. The first day we trained in for 1.5 hours to see Bryan, Mandy, Ashely, Craig and Hallie - all the cousins on my side, and were so wonderfully hosted by Bryan and Mandy in their gorgeous apartment near World Trade Center. We felt that the older generation would be so proud that we met up for Sunday brunch. Sam LOVED hanging with her cousins (and the cat, obviously).

The next day we trained back for my first appointment with Dr. Schattman. He did his analysis and said that yes, I do have Asherman's - my uterus was indeed sealed for the entire 4.5 cm passageway from the cavity to my cervix. In addition, I was a disaster. I had multiple cysts, endometriosis (growth of the uterine lining all over the place) ALL over and that my Fallopian tube was a mess. He said this was going to be more complicated than originally thought. His fees tripled, the time needed tripled. Awesome!!!

We had to do pre-op testing, including a pregnancy test which just annoyed me, get prescriptions and go to about a hundred and one offices before we could head back. While we had left home at about 9:30 to go to a doctor appointment, we didn't get home until nearly six! I then had the pleasure of doing a bowel cleanse - mixing this nasty bottle of stuff with 2 huge bottles of lemon lime gatorade (NASTORAMA!) and drinking it all within about 1.5 hours. To be honest it wasn't as bad as I expected, but it wasn't fun. That day I also developed a stress related neck pain - pretty painful - which didn't leave until one week later. While you would think that surgery is scary, it was much easier to focus on the neck pain and bowel cleanse, as they were extremely inconvenient and really had nothing to do with the main point!

Tuesday, at 6 am, we left for the hospital. Jeff and Robin were so sweet to loan us their car and their babysitting services. Sam LOVED hanging with them, and they (especially Aunt Robin) were amazing with Sam. They figured out her food, her bottles, her books, they prepared their house for her - and got so many fun things that she loved - and she was in heaven. When we didn't come home until about 7 or 7:30 that night, we didn't even worry. She was in the best hands possible, and they were so happy to do it, which made it even more amazing for us.

We checked in, changed my clothes, even had to take out my nose ring. They did a whole bunch of questions, dealt with the neck thing - they have to put a tube down my throat, and they had to position my neck, so it turned out to be relevant - took some tests and generally told me exactly what would happen. It was so human (compared to Singapore). It was really nice.

In Singapore they wheel you into a hallway, then into an OR, then there are lots of people with masks and they put you out. Here they walked me up the OR, each person introduced himself to me, they had me lay down and told me exactly what would happen. We even got to joke a little bit. Then I went under for about three hours.

It took me a while to get well enough to go home, but all in all, the staff at that hospital were amazing and so respectful and helpful. We really appreciated the experience. Dr. Schattman said that with ultrasound guidance on the outside, he did hysteroscopy - using a little itty bitty camera and a loop that cuts, and while it was like going into a wall again and again, he found his way through the crazy thick scar tissue and re-created the passageway to my uterine cavity. After he did that, he said it was a total disaster in there. He then used laproscopy through my bellybutton and 2 other incision areas near my hip bones and cleaned up the rest. He was pleased with the results, but he said there is probably some permanent damage, and it's unclear how important that damage - to my Fallopian tube - will be. The good news is that my pain should go away and I am a normal functioning human being again. It's the fertility part that's iffy, but we're so lucky for my health that we'll stick with that for now.

He stuck in a balloon to keep it all open for a week, gave me a whole calendar of meds for the next month and sent me on my way. The next few days were really hard - I was REALLY sore, more internally than externally - but Uncle Jeff, Aunt Robin and their family were our saviors. They took care of Sam and me - we had so much loving food and just a wonderful home to hang in and recover.

Friday Matt and Sam went to Michigan. Matt said that it was okay, but that getting through security with 2 laptops, baby bottles, a baby and huge suitcases wasn't so simple. I took a train to the city. In my head I would just take the train to 125th, get out, grab a taxi and get to my friends, Ellen and Ari's apartment on the Upper West Side. I could really barely walk. I made it to the train, sat there, got off, took the elevator down (scary), and walked so so slowly out to the street. Shit - I was in Harlem. I forgot that it's pretty hard to get a yellow taxi in Harlem. It was rainy and wet, so I couldn't put my bag down. I was really in pain. It sucked. Finally a bus came, and I remembered that it went to the UWS. I jumped on, nearly cried on the bumps and made it until I saw taxis. I jumped out, took a taxi and climbed onto Ellen's couch. I didn't move.

Over the next few days I got to see so many people I love, and I felt like their love took care of me. I saw Eli, Erin and Joe from New Jersey, Sarah came in from Boston, Alex, David and Flora, Flyer, Margo, Ruthie, Terese and Max, Paul, Eli, Ellen, Ari and Davey, Laura from Connecticut, Tamara, Goldfein, Jon...it was unbelievable. Ellen and Ari's hospitality was amazing.

By Sunday I was really feeling okay and was able to walk - even down to the 70s. I was staying in my old hood, near 94th and Columbus. I will write another post about what it was like to be back in New York, since that was significant for me. By Wednesday, for my follow up appointment, I was feeling really good - and ready to get this balloon out. He took it out and told me to do whatever activity I feel up to (minus a few things I'm sure you can think of). It was 60 degrees and sunny. I was in New York City and had nothing to do until 2:15 when I had to leave for my flight. I thought I would walk from 68 and York over to Madison and take the bus up. Then I got to Madison and thought that I could just walk (slowly, but still). Then I saw the park, and wanted to make a quick stop at 82nd and Broadway to get Davey Samara's two favorite books (Caps for Sale and From Head to Toe). I walked across the park, landed up at 85th, walked over to Broadway...then I remembered Zabar's down on 80th. Walked down there for a knish, went up to 86th and Columbus to meet Ellen, went to the park with her and Davey, and ended up walking back to her apartment. I couldn't have imagined I would have done that - even two days before. I felt great. I made it to the airport, got on an earlier flight to Detroit, arrived just in time to get about 20 crash hugs from Sam and have dinner with Matt's fam. Overall, a really successful trip and a crazy experience so far...

12 comments:

DeDe said...

Yes Melanie you do have blog followers, even ones that like to read every detail you think is TMI. Happy you are feeling better and now back with your family .

Spatial Relations Consultant said...

He loves the books!!!!!

beresanj said...

Dear Melanie,
I recently moved to Singapore and I have strong Asherman symptoms after a D&C However, the gynocologists here are not investigating. I would like to get a diagnostic and then try to find a specialist, maybe in the US. You wrote that you had 4 opinions evaluating you with Asherman. Can you tell me more?
Thanks a lot!

Matt and Melanie Hildebrandt said...

Hi "Beresanj". I'm so sorry to read your comment. I don't remember all of the details, but I took this from an email I wrote around the time:

I first went to Dr Paul Tseng who is the one who performed the D&C. I then got second opinions from doctors including Dr Jothi Kumar, Dr Loh Foo Hoe and a few others, and now (this was 2 years ago) I am seeing Dr. Mahesh Choolani, though he is for high risk pregnancies, not for infertility. To be honest, when I met with all of the doctors they were telling me really different information from what I was reading on the Asherman's listserv, none actually specialised in hysteroscopy, plus they said they see about 3 of these a year, which is why I decided to get treated in the US (I'm also American and generally just felt more comfortable).

The doctors I liked the most were Dr Loh Foo Hoe at Mt E and Dr Jothi Kumar, at Gleneagles, though I don't believe either specialises in hysteroscopy. Before I got pregnant I also had an appointment with PC Wong (which I didn't end up needing), at NUH, but I don't know that this is his speciality (just infertility in general).

I hope this is helpful. Good luck!

beresanj said...

Dear Melanie,

Thanks for your answer. I am just wondering how these doctors were so confident about the diagnosis without performing a hysteroscopy. We are still a bit "in the air", not knowing where to go. My wife is already 3 months without period after the D&C and a pretty swollen abdomen. She is from Canada, but the health system there has not been very effective for her.

May I ask how your current state is?
Furthermore, can you give us an idea about the number one would have to plan for such the treatment? Actually, we are not quite sure whether we have the means for that..

Many thanks so far, and thanks in advance!

Matt and Melanie Hildebrandt said...

Hi - The doctors in Singapore were not sure it was Asherman's. Actually the only one who said it was this was Kumar, and he wasn't confident - he just wrote it on a piece of paper and told me to look it up. When I looked on the internet I saw that I had a lot of the symptoms - cyclical pain (SO MUCH pain), no period, had had a D&C, etc. Each of the docs did an ultrasound and saw that they could not see an opening in my uterus - there was no visible separation between the uterine walls - but yes, as you say, they could not be sure without a hysteroscopy. I also had a sort of swollen abdomen - like your wife - and it turned out to be a lot of blood in there and a mess of endometriosis and cysts. It's so uncomfortable. In Singapore we were quoted about S$5K to take care of it at Gleneagles. In the US it ended up being more like US$33K (it ended up being more than they thought bc they had to do laproscopy too), but my Singapore health insurance paid for almost all of it. It had to be noted that it was not pregnancy related. There are a few doctors in Toronto I have seen people talk about on the Asherman's listserv. Would be worth checking out. My current state is TOTALLY healed. I had a healthy baby in Aug 2013 and am pregnant again. Best of luck to you and your wife.

Hopeful said...

Hi Mel, may i know how many procedures they took to clear your uterus of all the scarring? Am currently in Sg as well and seeking for a good doctor that specialized in Asherman but to no avail so far. Considering travelling out of the country to seek medical treatment but need to consider the possibilities of the scar reforming and we have to make few more trips back to see the doctor. So, kinda lost now

Matt and Melanie Hildebrandt said...

So sorry! I forgot to respond to this and just found it in my inbox. I had only one procedure and then a folley catheter balloon for a week or ten days (can't remember, but it may be in this post). There is an A list doctor in Sydney, I believe. I think that's the closest to Singapore. Best of luck.

Nand C said...

Hi. Firstly we would like to say that your blog has been very reassuring. We have been in Singapore for 5 years and had a missed miscarriage followed by a D&C earlier this year. We now suspect we may have had scarring and could have Ashermans. You mentioned you are seeing Dr Choolani now. Would you recommend him as someone to visit to help diagnose if it is indeed Ashermans? We are keen to use a different Dr to diagnose us and if it is indeed the case we will likely travel overseas for treatment.
Thank you

Matt and Melanie Hildebrandt said...

Hi - I'm so sorry you're going through this. Dr Choolani was a good doctor for a high risk pregnancy, and he definitely knew what he was talking about and was familiar with Asherman's, etc. The person who diagnosed it for me and first told me the word, Asherman's was Dr Kumar at Gleneagles. I might go to him for this. Best of luck. It's so not fun. :(

Nand C said...

Thanks so much for your quick reply. If we may ask did Dr Kumar carry out blood/hormone tests first or did he go straight to a diagnostic hysteroscopy?

Matt and Melanie Hildebrandt said...

I went to him with cyclical pain and a big puffy belly and he did an ultrasound and saw a whole lot of black (blood) and no passageway (no uterine cavity). I didn't have a hysteroscopy at all in Singapore - the only one was when they did the surgery in NYC. Everyone in SIngapore did an ultrasound. I also didn't have blood tests in Singapore. As I mentioned, though, the doctors in Singapore do NOT see this often, so it's not their expertise. I think there's an Asherman's A list doctor in Australia. I HIGHLY recommend joining the Asherman's support group - the yahoo one. There are so many amazing resources. http://www.ashermans.org/support/online-support-groups/