Something called cancer gets in the way

The cancer came somewhere between breakfast cereals and evening snacks. Between work and house dreams. Between love and … life. I was unsuspecting.

A pap smear in 2002 shows an atypia which is “difficult to interpret”. Something in my vaginal parts differs from the usual. The sample is retaken after a week and it comes back as normal. I think, that sounds quite weird. But buy entirely the explanation that it “sometimes happens”. At age 23, of course nothing bad happens to you. 

Three years later, I have a new appointment with a pap smear. Before the routine check, I have troubles with a stubbornly aching abdominal pain. I have also sought help for bleeding and irritation in my lower abdomen that feels strange. Then I get the answer that I have an “easily annoyed cervix”, which also seems reasonable. The midwife who does the test this time raises her eyebrows a little surprised when I now have pain and bleed heavily. ”Come back if you get a fever”.

(After those words, I still find it difficult to take midwives seriously. With a few exceptions)

A week later, I call the gynecologist reception at the hospital. I get hospitalized and get antibiotics intravenously for a severe infection on the cervix. The doctor’s test also shows cell changes. The general surgeon is called in and examines me. He plans for an operation where the cervix is to be laser irradiated. A psychologist comes into my room, sits on the side of the bed with her head tilted and puts her hand on my leg. The family is visiting, worried. I calmly explain what is about to happen and what has been indited to me by the doctors. “Cell changes are not dangerous”. It is even a little exciting to be sedated for the first time.

On the post-op are other girls who have undergone the same procedure. They go home after a couple of hours, I am being rolled up to the ward again. At that time, an invasive cervical tumor has taken root in the body, but doctors cleverly avoid the word cancer. Afterwards, I have understood that the staff very well knew what was expected and that cell changes were just a small pretext for the operation. The term “happily unaware” is shoved down the throat. When the doctor enters my room after the operation and wants to talk about his findings, I am completely unprepared. I’m being paralyzed.

We sit in a cell-like minimal room, me and my partner. I see the lips of the doctor moving, but do not understand what he is saying. Thoughts wanders off. I am bothered by the psychologist’s red lipstick and aunty hairstyle. And I think to myself that it is a strange thought to be having when the doctor tells me that I have cancer.

My case is taken over by the Sahlgrenska University Hospital in Gothenburg, where the doctor does an examination under anesthesia. The general surgeon at the town hospital is confident and assures me that he has probably removed everything when he did the radiating. “This is just a routine procedure”. Once again, I’m being fooled. The second time in a short while I am lying in a post-op. I see the doctor who examined me walking around to the other women and talking reassuringly to them, they are smiling relieved. Me, she walks just past, without wanting to face me. The fear grabs me, instinctively I know what that means. Quiet tears aches within me. I hold my breath for two days.

I’m back in the hospital on a Wednesday. In an as small room as the last one. In sweeps a storm of disaster, disguised to my doctor. As scaled-down and light-hearted as announsing what´s for dinner, she gives me the information I have feared. “As I suspected, the cancer remains, so we will remove it”. Cervix, lymph nodes, tissue and uterus. Everything will be removed. It takes a while to realize what she says. Within me, an abyss opens. I have hold my breath for so long that I no longer can breathe. Out comes a scream and the beginning of a flood of ​​dammed and uncontrolled crying. The doctor is confused, “I thought you were informed”.

I leave the hospital shocked and mentally turned off. In the car home, me and my partner sit quiet. The tears run down my face, I don’t even care to wipe them. In the luggage there is a drying rack for the bathroom, which we had intended to return at Ikea after the conversation with the doctor. How incredible stupid. It is no longer possible to ignore the problem, this is really happening. On Tuesday I will be operated. For five days I cry constantly, there is not more time. The partner says the right things in the moment, but deep down I know this will not last. Not because I am playing martyrs and feel sorry for myself. Because I just know. Our relationship is not built to cope with this disaster. We have just moved to a house, it is now that life with plans for family should take over. Something called cancer gets in the way. My life will not be the same.

April 12, 2005, at 6.10 am, I am outside the hospital gate. I haven’t slept all night. I do not understand how the body is steered into the hospital when the panic and predator within me scream to run away. I have such anxiety that it feels like I’m going to fall apart. I am 10 minutes late and I get a scolding from a stodgy nurse. I feel like I want to kill her.

With thin drapes in between we are lined up. Like cattle on their way to slaughter. One after the other we are rolled away, sometimes there is a slight traffic jam in the hub into the operating rooms. Someone screams in anxiety – “I don’t want this!”. It could have been me. If it wasn’t because I’m afraid of losing it. Even in the worst time of my life, I am too well behaved to be troublesome.

The surgery goes well. The test results are positive. As quick as I was with cancer, as quick it is removed from me. I never even felt sick. Left is a scar on the stomach, which reminds me the days I wake up and supposedly believe that everything is like it was before. That everything was just a nightmare. And that I could still be a mother. Left is also an indescribable anger that the universe and one of Sweden’s foremost hospitals deprived me of the most sacred. Afterwards, they leave the anxiety of not understanding why I, by a gathering of older women, is the only 25-year-old at the ward. A nurse wants to talk about how I look inside after the surgery, wants to give me the tools to process. But I’m not there. I do not know how to explain that the doctors dug a larger hole within me than the size of a uterus. Surely I will regret that I do not listen, but I just want to go home. Establishe a strategy to cope with the days in the hospital, one minute at a time. I bury the psychological pain in a safe place deep within me where no one can access it. Cancer is gone. Outwards, everything is just fine.

Two months after I first received the diagnosis, I am back at work. Everyone seem relieved that I take everything so well. I talk about everything that has happened and I feel invincible. Feed of the attention I get. I tell myself that I am indeed strong and that I got away lightly. “There are always those who have it worse”. The partner moves out and I bury myself in work. What defined me up to the cancer has been an insatiable energy and demands of performance. I’m not going to stop now. Fight bravely not to change. It works for a while. As people move on from what has happened to me and the everyday is back to normale, the emptiness within me grows larger. At lunch breaks, I pull away from the others. Can’t bear to listen to their talk about families anymore. Can’t bear to keep up the facade for their staring eyes. I’m not the same anymore. My rescue becomes a fatigue depression, one year after the surgery, which is piercing everything. Only then, I let go of the control over my feelings.

Mother of Life

2013. In the starting of the new womb life

”Sometimes I think I can feel it. Not so much physical. More spiritual. In the sense that I feel it lives inside me. Like talking to me. It immediately told me that something was wrong when I got sick after the surgery. I hardly got used to being at home before I was back in the hospital. Now it’s different. Now it says “I am fine in here. I’m ready for my purpose. We can do wonders, you and I.”

Mom calls it our uterus. The organ that once was hers and who shaped me and my two younger sisters. My first home. Now it’s my uterus. I didn’t know it then, in the early 2013, but the same uterus would also give life to my two children. Having been useless for a woman for over 20 years, it could be given to another woman – her daughter – and be reused to create a fourth and fifth child. One womb – three generations.

On the outside, there is not so much difference. Apart from a scar on the stomach, I look and behave as I did before the transplant. On the inside it is a profound difference. I’ve got my fertility back, the one who was brutally taken away from me 10 years ago. I’m like other women – again. With the same opportunity and chance of having children. A family of my own. I want to shout it out loud from the roof top. But I keep it quiet to myself. As a secret. Just me and my womb who know. We have our own language. Our own alliance.

I have tried to imagine what she looks like. The uterus. Mother of life. The anatomical images do not really make her justice. For me, she is more of a big warm heart that gives the rest of the body a spiritual peace and harmony. Places that were hibernated, thoughts and feelings that were buried – everything is brought back to life again. By this heart. Symbolically, our son was born with a heart in his forehead. A stork bite that fades over time but which will always have a great significance for us.

(In swedish, the word for ”uterus” is ”livmoder”. Directly translated it means ”lifemother”. Many years ago, before transplantation became real, I wrote an article about my story. The editor of the magazine gave it the title Mother of Life. I liked that expression. Carried it with me and wrote it several years later in my diary.)

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.


Mom

Mom and I are not that close. We do not call each other very often. We do not share recipes or secrets. She is not the type who has strong emotional manifestations. Still, she never hesitated to lay on the operating table for my sake. I get that. Now. I would do everything in my power to make my children feel the same feeling they give me when I hold them in my arms. If they wanted me to.

Mom is a very rational woman. Pragmatic. She does not ruminate and ponder over things. And when she decides for something, she does it. As in the case of donating her uterus. I do not possess any of these characteristics. Nevertheless, I inherited a lot from my mother. The persistence. The pride. A little laziness. But also a great drive. An inner strength.

I do not remember asking the question. She, on the other hand, had followed my interest in uterine transplantation and the research at Sahlgrenska for a long time. She was well prepared. When the discussion about donation came up she just answered “of course”. And then there was no more to it.

Nowadays we share something bigger than recipes and secrets. The bond to my children and the adventure of how they were born. We don’t talk about it that much, but it’s there. We both have in common that we have removed the uterus. And although the circumstances were completely different, there are several things we can relate to. The scar on the stomach for example. And when we get the repetitiously question if we feel less female because the uterus is gone, then we both shake our heads laughing.

The ethical debate in the medical world, whether it is right to ask a mother to donate the uterus to her daughter and the risks involved in surgery, is not my place to comment. Such questions can only my mother answer. This is entirely her words:

“I did not feel forced to participate. And never at all, I felt pressured. I had plenty of time to think and opine, but above all to mentally understand and realize what awaited me. When my daughter asked the question I had already decided. However, I don´t think I would have donated to anyone entirely unknown – On the contrary, I would like to have some bond to the one I´m donating to.

To completely understand what an operation means, I don´t think anyone does. I had never been operated before and we were furthermore the first couple to do the operation in this research, so it was obviously difficult. There are risks and consequences in everything you do and my attitude for the most part is that you can not worry about them. Otherwise, there is not much to live for. In addition, I felt a great confidence in the medical team. I had a gut feeling that this will go well. It will be successful and it will be a baby.

If it had not worked, then we at least would have tried. I don’t miss my uterus at all. I have given birth to three very lovely daughters and I do not need it anymore. And considering the inconvenience I had with bleeding in the end, I was just glad to get rid of it. I do not regret it. I have donated something nice and got a good “reward” in the sense of two wonderful grandchildren.

I am for uterine transplantation. The more operations that are done, the safer they become. There are many who struggle with their infertility and who need this surgery. I want more people to know about it. “

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It is not the uterus you have sex with
Illustration from the book "Underbara underliv". In it there's everything you need to know about the female genitals.

It is not the uterus you have sex with

Let´s set a few things straight regarding the womb, right from the start. 

The uterus is the amazing organ in the woman’s body in which a fertilized egg clings and for nine months develops into a child. No bigger than a fist, it is embedded in the pelvis – behind the bladder and next to the tubes and ovaries. The entrance to its inner is a really thin canal called cervix. About the canal, you might as well say exit, when in fact there are more things that go out than in – discharges, menstruation fluid, a kid.

This with the cervix baffles a lot. Some mistrust it for a wide open path from the vagina into the uterus. However, the cervix is not a sea lock, which transports larger things back and forth as desired. With big things, I mean of course penis. It is completely impossible for a penis to get into the uterus. End of story. This because of the shape of the cervix, but also the function of the vagina. The vagina is elastic both deep and wide to accommodate most penises, thus not allowing them to get any further. Furthermore, in majority of women, the uterus is bent forward at almost 90 degrees and if you try to bend an eroded penis it will break.

Conclusion: When transplanting a uterus from the woman’s mother, it is not the same thing as the man having sex with his partner’s mother. According to the internet, there seem to be some people who believe that.

The uterus is a shelter, a place to grow in. The plant substance itself, i.e. the embryo, is already produced (in my case in an IVF lab) when it settles in the uterus. In other words, the uterus has no effect whatsoever on the child’s hereditary factor. My children are a product of me and my husband. Not my mom. This, it seems to be some opinions about as well. 

Without the uterus – no child

I understand. The uterus is not an organ that you generally need to pay much attention to. It is either seen nor feels particularly frequent. It is therefore no wonder that you don´t know so much about it. What amazes me, however, is how many people that are not aware of this: without a uterus, there are no children.

Over the years I have been forced to endure a number of embarrassing harangues from people who mean well, but who do not have a clue what it means to not have a womb. People who I barely know, who call me after my cancer surgery and instruct me to “relax, it will be a child when you least expect it”. My boss at the publishing company I work for (in the corporate group, they issue one of Sweden’s biggest women magazine?!) try to convince me that a private hospital in Stockholm fixes everything when it comes to infertility. ”Just apply for care there and then you’ll see you get pregnant”. Pointlessly, I try to explain that there is no chance in the world you´ll become pregnant if there is no uterus.

The woman’s internal genitals work in perfect symbiosis. The ovary that releases the egg, the fallopian tubes that intercept the sperm and make sure it will become an embryo. And the uterus that allows the embryo to develop into a child. All parts are equally important. If any part would have a malfunction, there are several treatments for both the woman and the man. Stimulated ovulation, sperm injection and in vitro fertilization are three examples of such treatments. Since involuntary infertility is classified as a disease, you are actually entitled to these treatments.

But when there are problems with the uterus (malformations, adhesions, absence, you name it), then it´s a stop. Then there is no treatment. Until now. Sahlgrenska University Hospital made it possible through uterine transplantation. Not a private hospital in Stockholm. In other fertility issues, I´m sure they are great. 

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Then I will also rejoice

September 2012

I’m not good at being sick. (Is there anyone who is? How do they do?). I close myself. Wear an invisible blanket around me and bite the bullet until I’m capable enough to take the world in again. Being in bed at a hospital and in the hands of healthcare staff do something to me. I feel small and diminished. It all reminds me too much of the past. When I had cancer and they took my uterus. I was the only 25-year-old among a bunch of elderly ladies who sat in the tv room and read gossip newspapers, seemingly untouched. I thought my life was over. Never before have I felt so lonely and devastated.

This time it’s different. The operation is voluntary and not traumatic in that way. Literally, it may give me another life. Yet, it’s hard. I don´t recognize myself. My eyes are blurry and my brain is sluggish and syrupy. I strain myself to formulate words to people around me. The body is stressed. Speeded. The pulse rises to the double as soon as I move. I have never tried drugs but I imagine it’s like this when you are high. I feel chased. Would like to strap on a pair of running shoes and run as fast as I can. Although I’m one of the world’s laziest people. The troublesome shaking does not want to stop, the worst is in the legs. In order to get some rest, I force myself to the bed and firmly press down the legs flat against the sheets. Restless legs have got a whole new meaning.

The doctors are looking for explanations for my and S’s condition. Some symptoms are typical side effects of the drugs and will ease. Others, such as shaking, are puzzling. They consult and give the drug manufacturers a call. The explanation they finally agree on is that we have received a bad batch of the medicine given in high doses at the time of surgery to knock out the immune system.  Mats Brännström, chief of the project, is worried. A whole world has become aware of his life work and the pressure is enormous. And we are worn-out and depressed at the hospital. He has nightmares involving a black lump of organ coming out of us and he tells me ”You have to pull yourself together”. Han calls my partner and asks him to bring magazines and other things that will distract me. And then he sends up the team’s psychologist.

We have talked about this though. What happens to the mind and body when moving from a healthy state to a sick. The other patients at the ward have usually been sick from kidney or liver disease for a long time and usually recover a few days after the transplantation. Often, the donor is worse than the patient. Now it’s the opposite. My mother is a patient at the women’s clinic, but walks relatively unconcerned across the hospital area to visit me a couple of days after the surgery. A day after that she is released from hospital. I continue to vomit and shake.

Against the pain from the surgical wound, I get headache pills. Against the shakes they give me morphine syringes. First intravenously. Then straight into the legs. When that does not work, I do the thing that gives me a fairly relief. I walk. I walk manically in circles, at first in my room and later on in the corridor. Lap after lap, I walk in my Foppa slippers, day and night. Sleeping pills have no effect. Eventually we are allowed to go outside the ward and down to the main entrance. In the hospital area there is a construction site. Building dust and sensitivity of infections are a bad combination for us and we need to wear a mask and a chunky coat over our clothes. S comes back from a trip to 7 eleven, crying. She feels like an alien that everyone is staring at. I don´t have the energy to care. Steeled, on the verge of resigned, I keep my fake smile on and try to do what is expected of me. No nurse likes a grumpy patient. It feels a bit embarrassing to be down and gloomy after an operation like this one. I swallow my medicines, drink a lot from the can and write down how much I pee and eat. Trying to get as much food as possible in me, though only the smell of food makes me nauseous. I avoid the day room for that reason. Also, I do not want to risk having to talk to any of the other patients. It feels extradited and tricky to get me into a discussion that I have a transplanted womb. I let them believe I’m kidney or liver transplanted.

With the uterus it is all good

With the uterus itself however, it’s all good. That’s nice. Every day, Dr. Liza comes in and measures the flow of the uterine arteries. They are the ones who provide the uterus with strength and those which the entire operation is depending on. On the ultrasound scans you can see how my vagina is once again connected with something bigger. A room for a child. Inside the uterus is the endometrium, the layer whose thickness will be decisive for an embryo to get caught. On the ward where we are located, a special examination room has been set up for us. On shaky legs we crawl up in the gynecological chair to do the first biopsies on the uterus. Those who show how the uterus really feels. It looks good. Mats Brännström is relieved. I long for home. I need to get out of my shell and lick my wounds in private. Feel like myself again. Then I can also be happy about the operation.

On the twelfth day, I´m finally released. I go home. I breathe out. Five days later I’m back in the hospital. I have a fever and a diffuse pain in the abdomen. The body shows all signs of a rejection.

 

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