No one told me what the little plastic cups were for

The transplant reception on floor 6 feels at first sight as a slightly scary place. Here we shall, after we have been released, turn up for regular check ups. Initially, it is twice a week, but over time the visits becomes more sparse. We meet them in the corridor and in the check-in. We see them sitting in the waiting room with their notes. The others who have got an implanted organ. Now we are one of them. The transplanted. Kidney transplanted, liver transplanted and uterine transplanted in a peculiar mixture. It’s all peculiar.

The first time I am there, one of them starts talking to me. “Liver or kidney?”, he asks. Half panicky, I respond “well, I am a uterine transplanted”. It’s the first time I say it out loud. And with the scary propaganda I have been provided with, I expect him to call the press directly and tell them that here is the girl who is first in Sweden to have received a uterine transplant. He does not. He rather feels embarrassed by the answer and hurries to finish the conversation. Or is it me? In any case, I note to myself to avoid the sofas in the waiting room from now on.

A friendly nurse, who immediately becomes my favourite in the herd of nurses, gives me a tour. The room with four small stalls with each patient chair, in which the nurse sticks a needle into the arm and supplies herself with blood to a certain number of tubes. The kitchen where you as a patient can arrange any food after leaving the blood sample. (To most of the blood samples that the doctors check the health status with, it is necessary to be fasting. You must also wait to take the daily immunosuppressive tablets.) The small “box” slightly opposite the sampling room which can best be described as one of those popular smoking rooms back the old days (in it you sit to inhale a medicine that prevents a certain kind of pneumonia). And the toilets. One frequently used toilet (by the looks of it) directly to the waiting room, one a little further down the corridor and one inside a patient’s room that can be used unless the room is occupied. It is a good idea to be in need of peeing when you arrive to the reception since it every time, one or two tubes also must be filled with urine. And when you are in the toilet, you can take the opportunity to drink a mouth or two from the small white plastic cups that are stacked in a container on the wall. Practical!

Then the round tour is over. Nothing more to see. Not so scary really.

After a while it becomes a routine. Take the elevator up to the sixth floor, push out a number patch and sit on one of the chairs outside the sampling room (instead of in the waiting room). Smile a little when the nurse takes the blood samples, bring the tube to the urine sample into the toilet, do your thing and then leave the tube in the refrigerator. Then go down to fourth floor and end up with the others.

In the beginning we are the unbeatable four. Me and S operated on September 15 and 16, 2012. And another two women operated one month later. We become a group. A band. (A little further on, five more women are operated. They form other groups.) We sit in the dayroom of the ward where we once were cared for – eating our breakfast sandwich from Seven Eleven, taking our medicine and sharing our life stories – while we wait for Dr. Liza to examine us. After a while S disappears. She gets an infection that cannot be cured and the uterus is taken out. Our unbeatable quartet becomes a trio. The three Musketeers.

The moments in the dayroom are, when I look back, some of the best moments of the year after the operation. The sisterhood. How we tense get through month by month, before we get an embryo inserted into our transplanted uterus. There is so much to talk about. We and our partners, who are almost always there with us. Where we come from, what journeys we made and what awaits us in the future. The grief, the disappointments and now the expectations. There is so much to laugh about. We laugh at entanglements and embarrassments. Gynecology examinations and sperm samples delivered in a patient shower. They laugh at me when I complain about the small tubes we have to fill with urine. ”Like, how do you as a woman do to hit the hole?!”.

“That’s what the white plastic cups are for”.

4 things I learned about my transplanted uterus

My mother’s womb was operated into me. Here are 4 things I learned about it after the transplant.

1. It was not noticed

Remove thoughts from the movie Alien. This was nothing like it. In other words, no uterus that fervently tried to break out of my belly. Most of the time, my new uterus lived peacefully inside me without making so much fuss of it. Physically, there was not so much difference to before. I would think that the uterus accepted its new destiny just like any other transplanted organ. As part of a new body.

However, this was groundbreaking research and the first time a woman could actually compare the experience of a congenital uterus with a transplanted. So maybe it was not so strange that people asked “does the uterus feel like your own?” I replied that it feels … quite natural. So yes, like my own.

2. It bled HEAVILY

My own period I remember as quite “kind”. I sometimes had a rather intense menstrual pain, which I got tablets for. The bleeding was a bit more abundant the first few days, as usual, but then  ordinary panty protection served just fine to catch the last dripping. The bleeding I received after the transplant was f a r  a w a y from nice.

The first seven days of each menstruation I had to keep myself indoors. I simply couldn’t be too far away from a toilet. The alternative would otherwise have been to bring a pack of extra pants. I worked out a system where I walked around half-pinched and once every half hour went to the toilet to ”drain” myself. What came out was a whole cataract. Such a flood of blood was enough to bleed through everything I had on me. On the plus side, I didn’t have any menstrual pain.

The doctors argued that it is likely that the womb bleeds more the older it gets (and that I might have had more abundant bleeding if I had my own uterus left). I myself am quite convinced that with my mother’s womb I also got her bleeding. Mom told me that in the end (on the way into menopause) she had such severe bleeding that she had to wear four sanitary pads at the same time when she was at work. And that wasn’t enough.

My theory was confirmed six months after the transplant, when it felt like the bleeding stabilized somewhat. It became a little more manageable. I believe that the mucous membranes of the uterus simply needed time to adjust to my hormones and that the first menstrual periods followed moms’ patterns.

Photographer: Lennart Wiman

3. It enhanced hormones

Hormones, yes. If you ask the doctors, they would stubbornly maintain that the uterus is not a hormonal organ. It is in the ovaries that the woman’s hormones exist. Which is exactly correct. However, I would say that the uterus is a larger supporter of the ovaries than you might think.

Without a uterus, I was rather clueless. I didn’t know where in the menstrual cycle I was, nor was I affected by it. With a uterus however, it was something completely else. Sore breasts, swelling, irritation, fatigue, cravings and depression fluctuated faster in the body than I could keep up with. Classic symptoms of PMS that should technically occur even without the uterus, were suddenly v e r y tangible. Anxiety and other mood changes were experienced both stronger and more intensely. My sweet clueless life had been changed to a long roller coaster of tricky hormonal conditions. If the ovaries were to be described as two speakers, the uterus appears to be a powerful enhancer.

After removing the uterus a second time, I can say that I overall feel much better without the uterus. In the past, I could, in between ovulation, PMS and menstruation, at the most have 4-5 good solid days per month. Now they are considerably more. The body no longer feels like a hormonal yo-yo. I am not a doctor, but for me it feels like you could help substantially women with difficult PMS problems – just by removing the uterus.

4. It did certainly express kicks

For a long time, the majority of the team believed that with a transplanted uterus, we could not feel pain, let alone kicks and contractions. They were wrong. Despite cut veins and cut nerve fibers, the uterus found a way to still express what it experienced. I felt when the gynecologist snipped a little bit wrong in the os uteri for the tissue samples. I sure felt every time the IVF doctor inserted the instruments to place the embryos in the uterus. And each time the doctors were equally amazed.

I knew my kids long before they came out. I felt their first kicks, their hiccups and other small movements and peculiarities that are still typical of them. I’m pretty sure I felt contractions at the end of pregnancy. I just did not know that it was in fact, the contractions I felt. Because the doctors were so confident that I would not feel anything, no one thought of asking or informing me about them.

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