April 30, 2020

Always a woman

Testimony by a mother of 3.

Six years ago, I gave a lecture on what had happened to me. I told my story to gynaecologists, physiotherapists, nurses, etc. I hoped for a change in healthcare, more attention for this taboo. For a long time, nothing (or too little) happened. Until now. With my story, I want to do my bit to prevent what happened to me. Because that is possible, if we dare to ask questions and dare to listen.

My story begins with my first pregnancy, nine years ago. It was a fantastic pregnancy. Few serious complaints apart from some nausea in the beginning. Oh and yes, I did lose some urine during sneezing or coughing, but I wasn't too worried about it at the time. It will go away after the birth', I thought ...

Prenatal care and follow-up

I also attended antenatal classes, offered by the local hospital. Group classes. During these classes, we mainly learned something about the proper pushing technique and breathing. There was no explanation of how the pelvic floor works. During the gynaecological consultations, I focused mainly on the images and explanations of how our baby was doing. How are you?" the gynaecologist asked each time, and I said "I'm fine," because I was. And that was it.

In the evening of 1 February, my contractions started, lightly at first. My husband even went to work the next morning. In the afternoon, we went to the hospital just to be sure. Five centimetres of opening, I was allowed to stay and according to the midwives I would be the first to give birth. Unfortunately, nothing could be further from the truth. Our baby turned out to be a little stargazer. I hardly made any progress in the next few hours and got stuck at 7.5 cm. I gradually became exhausted and started to turn away. In the end we had been working for 24 hours. Several times midwives and the gynaecologist asked if I did not want an epidural. In the end I agreed, otherwise 'I wouldn't make it to the delivery room'. The anaesthetic was given and I could rest. A few hours later, the opening was large enough and I was taken to the delivery room. I felt the urge to push well and pushed along. Apparently not enough or for other medical reasons, but at one point the midwife was pushing on my belly. Pleasant is something else .... After 29.5 hours our first daughter was born.

Day pink cloud

How happy I was. The gynaecologist told me that everything had gone well. I had been torn and cut up, but according to her, she could have stitched everything back together. The next day, all attention went to the daughter, getting her breastfeeding started, learning to give a bath, changing nappies. In between, they also changed my wounds. It all looked fine according to them. I had to take Movicol every day. The physiotherapist also came by. She explained the best exercises I could do to strengthen my pelvic floor and abdominal muscles.

Two days after giving birth, something happened that would change my life forever for the next few years. Our daughter's godfather had arrived with a bouquet of flowers. I was a proud mum and wanted to show the whole world how well I could already walk, so I went out to find a vase. Halfway through, I suddenly felt an urge to go to the toilet. I squeezed everything. What used to be a natural thing suddenly turned out to be the most difficult exercise ever ... I didn't make it to the toilet. There I stood in the corridor where I had just lost stool.

My world collapsed. The happiness of being a mother suddenly took on a very bitter aftertaste. What was this? I did not understand! Did this always happen? Why had nobody told me anything about it? I slowly moved back to the room, stunned. I couldn't find a vase,' I said and went to the toilet. With tears in my eyes, I looked at the bandage. I couldn't understand what I was seeing. I tried to soothe myself. It must be an accident that will never happen again,' I thought. I wiped away the tears, cleaned everything and joined my family again. All attention to the daughter. In the days that followed, it was never the right moment to speak to the gynaecologist about this. Either there were visitors, or I didn't feel strong enough yet to talk about this accident on my own. On the day I was discharged, I gathered my courage. My gynaecologist was not there, but there was a replacement. I told him briefly what had happened and he told me not to worry. The wound would heal by itself. Take Movicol and don't push when you need to have a bowel movement. These were the instructions. No record was made of my 'accident'.

Get well that did not come

Said, done. The following weeks I waited for things to improve. But it was still difficult. When I had diarrhoea or exerted myself heavily, I had difficulty holding my stool up. Urination was also part of the problem. I can probably hear you thinking 'Why didn't she go back to the gynaecologist? Honestly, I don't know. I do know that during this period I was declining. All the care went to the daughter. And when the daughter was asleep, the care went to the household or ... There was always 'something more important'. But I forgot to think of my own. There were also postnatal sessions offered by the hospital. I went twice. The exercises were in groups. Only the gap between my abdominal muscles was 'measured', no personal questioning, no adapted exercises, no personal enquiry about how my pelvic floor was doing. I did the exercises, but I didn't dare say, for example, that I couldn't tighten my pelvic floor when I had to do another movement at the same time.

All the other women seemed to do it on their own ... Was I an exception? Our daughter also started drinking irregularly, frequently asking for her breast. But babies were not allowed to come to postnatal classes, so I stayed at home. No more exercises. What did the doctor say? It will go away on its own. I hadn't told anyone about my accidents until now. Not even my husband, my best friends or my parents knew anything. I was too embarrassed and 'believed' that one day I would wake up and everything would be back to how it was before the pregnancy.... And I was afraid that people would be nasty to me, my husband would leave me, my friends wouldn't want to see me anymore.

Self-confidence took a deep dive

My self-awareness was deteriorating. I didn't feel attractive any more. Really 'being a woman' seemed so long ago. Sport was difficult. How do you tell someone that you can't jump the trampoline? That as soon as you start jumping your pants are wet? Maybe even your trousers? Walking was impossible, I didn't want to swim, you don't want to 'dirty' the pool, do you?

To give you an idea of my daily burden, here is a small list:

- shouting loudly caused loss of urine
- sneezing, coughing also
- running also
- after having a bowel movement I could just keep wiping, cleaning, but the next time I had to go to the toilet either my pants or my poo was dirty again

Six months later

I was confronted daily with my defects... Now, of course, life goes on. My work demanded a lot from me and my husband and I always talked about having several children, preferably close to each other. Having said that, and because to the outside world I seemed 'perfectly' fine, after six months I was pregnant again. That's what they call robbing your own body. But I didn't think about that.

I also had days when everything went well. Was I cured? Ridiculous, isn't it? You start to delude yourself. But no, the further my pregnancy progressed, the more I noticed that things were not improving. On the contrary. I decided to tell my gynaecologist. I asked her to see to it that the situation did not deteriorate during the next delivery and I asked if I could start physical therapy. According to her, the latter was pointless now (I was just over 20 weeks) and I had to wait until after the birth. She also promised to see to it that everything went well during the next delivery. The alternative of a C-section was not discussed.

I lived on, with my daily concerns. At some point, I had enough again and decided to inform my then general practitioner. I would like to mention that talking about it was anything but easy. You don't know how to begin. You have to cry, out of shame, powerlessness and disbelief. You are 'finished' after such a confession. I ended up with a substitute GP. I told her my story and after a short telephone call to a colleague she gave me the contact details of a physiotherapist and a prescription. This prescription clearly stated the problem of 'urinary and rectal incontinence'.

Meanwhile, I had told my husband that I was still suffering from sporadic urine loss and therefore wanted to go to the kinew. I left it at that. The physiotherapist did a good job. At least in the area of my problems with urinary incontinence. The chair incontinence was not treated. Meanwhile, I was tired of fighting. I didn't want to believe that nobody saw my problem or took it seriously. And I couldn't find the courage to tell my story again. When I went for another consultation with my GP, he didn't ask me about my problem. As if it did not exist. As if I had never told them anything.

Hello dear daughter

The delivery of our second daughter went smoothly, without an epidural. The gynaecologist assured me afterwards that everything had gone well and she had not seen any further damage. Everything looked good' according to her. As naive and stupid as I was, I believed that she had repaired everything. The first weeks after the birth also went smoothly. I went back to the clinic for my urinary incontinence and experienced little to no loss of access. I also went back to the postnatal classes, no personal examination or advice and in a group. And I didn't dare tell how difficult I was having with certain exercises. The other women all seemed fine ...

Yet the moment of truth came. I had wrapped my second daughter in a sling and wanted to go out, to the village centre. It was warm and I felt the heaviness of the effort. I had walked about 1 km when I suddenly felt the urge to go to the toilet again. In full panic, I squeezed everything back in, but in vain. It was a long way home. Tears flowed down my cheeks. I was not well. I had not recovered. I was not ok.

Months of grief, shame, disbelief and daily confrontation with my shortcomings followed. At the beginning of 2013, I was really fed up again and started to scour the internet. How do you start this, which words do you enter in Google. And make sure you know the history afterwards because you don't want anyone to be able to read your search.

Article Klein Pelvic Clinic

By chance, I came across an article in the UZA magazine, which described the small pelvic clinic. I gathered all my courage and called. Maybe they could help me. The day of the appointment was approaching. At work, I said that I had to go to an 'external' meeting. I did not want to give a doctor's note. I walked from one toilet to another. Weeping, trembling, Scared to death to tell. To a man. In tears, I told the doctor my story. He told me not to cry because he saw people with incontinence every day. But that didn't help. I am not everyone. My suffering is not the same as anybody else's. I had lost my dignity. And I wanted them back. I had to lie down on the examination table for a quick examination. My heart broke. Oh, how ashamed I was.

He diagnosed a rupture. But additional examinations were necessary to determine how bad things were. There were three tests. He said they were not pleasant but they did not hurt. Afterwards he expected me back for a consultation. The examinations were scheduled. Some were quicker than others.

I will not tell you in detail how these investigations go. But I have often come across myself. You are not prepared much in advance about the content of the examinations, what will happen, who will do it, how it will go. Nobody really puts you at ease. Why? Because for these people it is 'everyday' business. No shelter. No psychological support. You shouldn't cry, girl'. But it does a lot to you when you are put in an MRI scanner, pumped full of fluids and they ask you to push. And while you are doing this in tears, you notice how you are getting wet from below and losing stool. Whenever I think back on this, I can hardly control my tears. It leaves its mark ....

After going through these examinations, I had to go back for a consultation with the doctor. I was hoping for a short intervention during the afternoon, so that I wouldn't have to tell anybody anything. Of course, this was not possible. At least 1 week in hospital and 3 weeks at home for rehabilitation. The moment to tell my loved ones was irreversible. I had no choice. It was not easy. I don't need to tell you that, but it was worth it. The support I have experienced since then has been invaluable. And no, there is no one who looks at me dirty. My husband has not started walking. It is better this way, but I don't know if I could have done this 'before'.

At work, I told them I needed an operation. But I didn't want to tell them the reasons. That was difficult. Not only for me but also for them. What is wrong with her (because you can't see anything externally)? Does she have cancer? Many questions were not asked and I appreciated that very much but my colleagues were worried.

Afraid of the operation

The day of the operation was approaching. On the Wednesday before, I noticed how tension and stress were taking my body hostage. I became ill, a flu. I went to see a new GP. The best step I ever took. After telling her my whole story, she wrote me a doctor's note to stay home from work for the last few days.

She listened and she did her job. How? Very simply: by catching me. By wanting to follow me. By wanting to heal me. We immediately made an appointment for after the operation. And no, according to her I was not going to work again after a month. I was going to stay at home. To take care of myself.

Even though I was a bit sick, the operation could still go ahead. I was afraid. Who was going to see me, who was going to treat me? I remember very well that before I fell asleep, I saw the anaesthetist. Oops' she said, 'I know you'. 'Would you rather have someone else'. Half-drunk, I just said 'No, it's medical confidentiality'. And I was gone.

The operation went well. I stayed at home with my parents for two weeks, without the children, in order to rehabilitate properly. Everything turned out fine. After having a bowel movement, I no longer had to clean myself endlessly. It was as if the heavy rucksack had finally been lightened. I believed again that I could be cured.

Second operation suddenly reappeared

Unfortunately, 1.5 months later, it turned out not to be true again. After a visit to the toilet, I again experienced problems. A print in my pants. The world can be cruel. I wept so hard. For weeks afterwards my eldest daughter asked why Mummy had to cry (according to her I did it because I missed Daddy, who had just left for work). I was very sad ...

Another examination followed. In the meantime, I had been to the family doctor several times and he had also referred me to a psychologist and a relaxation clinic. Learning to love yourself. Learn to enjoy yourself. Learn to live. That was my assignment. I had forgotten all about it.

We bought a dog. Lucy. As crazy as it may sound, she showed me like no other what happiness is, basic happiness. The sun, the smell of freshly cut grass, rain, endless walks, a wagging tail. Unconditional love, no matter what.

The results of the examinations were in. A new operation was not the best option. Physical therapy was, in order to learn to use my muscles correctly again. I went into treatment for a few months. Here, too, I had to learn to persevere, to be strong but also to dare to be weak. My physiotherapist does a fantastic job. She was the first carer in the whole process who said: 'If it doesn't work anymore, we'll stop, we'll see each other at another time'. Giving a choice, trust, empathy. Cornerstones of care and indispensable. The exercises were different and each one confronting in its own way: stimulation, ballooning techniques, feedback, .... In the beginning still in tears, but these also subsided. I got used to it. And she put me at ease. She was then the only person to whom I could honestly tell how my day was. What problems I had encountered.

Six years later

Meanwhile, six years on and another child born (this time by Caesarean section), life with this condition has become more bearable. Let me be honest. The shame has not gone away. Neither has the sadness. It leaves a scar. Invisible to many and yet it affects my life every day.  

Am I cured? No. Yes, I can jump on the trampoline, walk, swim. I feel more feminine and attractive again, but that too comes with ups and downs. But I am well aware that I have to keep doing my physical exercises every day. And that when I get older, I may have to have surgery again.

My story is not the story of every postnatal woman. I know that. What we don't know is how many women are still walking around with similar problems. Who don't dare say anything. Out of fear, shame, belief... You lose all control over your life.

And there are solutions. If we all dare to raise awareness and refer if necessary, give information and learn to listen.

Reaction of the moderator who introduced the lecture at that time: "Madam, I would like to thank you again for your moving testimony, and express my admiration for your courage. As it was for me, when I first read your text, it was also for those present during your lecture. A wake-up call. We, as aid workers, need that from time to time."

Message @ this author, a courageous anonymous experiencer and fascinating mum: "Endless thanks for this testimony! Your words resonate... and will be a support to many women who follow after you! "The Women's Pelvic Health Antwerp team.



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