Maxine's story

My Fertility Journey as a Gay Woman with Endometriosis 

 

I was 29 when I first heard the word Endometriosis. I was at work suffering with the horrific menstrual cramps I experienced every month when a co-worker noticed the hot water bottle I had stuffed up my uniform and asked me about it. She told me it sounded like Endometriosis and gave me a book on it. I was immediately convinced that this was what I had. I had been suffering with excruciatingly painful periods since I was a teenager.

 

I had been to doctors numerous times about it, tried different birth controls and painkillers. Nothing had taken the edge off, in fact it seemed to be getting worse. Doctors, both male and female, told me that some women have more painful periods than others, and that it was normal, especially in women who had not had children. 

The last straw was when the GP recommended to be fitted for the coil. No way was I having a foreign hormone-emitting object inserted into my body without knowing the reason why I needed it. I point-blank refused, and insisted on being referred to a gynaecologist.

I was finally diagnosed at age 30 by laparoscopy. I was told that I had ‘mild endometriosis’, that it had been ‘treated’ and that there was no immediate risk to my fertility. I was relieved as I had just gotten married to my long-term same-sex partner and hoped to try and get pregnant. Around this time I was also referred to mental health services and diagnosed with clinical depression, and made the decision to go on anti-depressants to improve my quality of life. 

No one told me that Endometriosis was actually an incurable condition and that it would grow back, so a year or so later when my symptoms returned, I was very scared and confused. My wife (who was not able to conceive due to health issues of her own) and I were ready to start our family. We had been referred to NHS fertility services, and were hoping to go on the waiting list for treatment. It was recommended that I have another exploratory lap to check that ‘things were OK in there’ because my pain had returned and my wife was advised that she would need to stop smoking in order for us to eligible to receive NHS treatment. 

After the second laparoscopy I was told that the endo was more widespread than before, but again, that it had been treated. My first question upon coming round from the anaesthetic was ‘Can I still get pregnant?’ The consultant assured me that I was still able, but said ‘I shouldn’t leave it too long’. I explained that I was due to go on the waiting list for IVF. She recommended that I ‘keep trying in the meantime, as it could still happen’. I reminded her that I was married to a woman, which made this highly unlikely, and laughed about it later with my wife. 

The second surgery was harder to bounce back from. I found that I was tired and nauseous a lot. I started sleeping in for work and was unable to exercise as much as before. I had used to cycle to and from work. Now I could only make it halfway back before I was forced to stop and rest. Between PMT, period pain and ovulation pain, there was only one week out of the month that I was pain-free. Using birth control to manage my symptoms was not an option for me at that point as I didn’t want to do anything that might jeopardise my fertility. Gradually, my quality of life started to decrease. 

This was when it started to hit me what it meant to have Endometriosis. I joined some online forums, learned more about the aspects of it that the doctors don’t tell you about and listened to other people’s stories. What I read frightened me. People taking about how they had been lying on the couch for days glued to their heat pads, unable to work, having to go to the ER in the middle of the night because the pain was so unbearable. I couldn’t believe that I could ever get to a stage where I struggled that much in my day to day life, as I was such an independent, resilient person. My response to that was take more vitamins, switch to a strict anti-inflammatory diet and power through, with the end goal that I wanted to be in peak condition to get pregnant. I think this was my way of trying to take back control of my body.  

Meanwhile, my wife, who suffered with anxiety, was finding it difficult to quit smoking. In the lead up to our next fertility consultation I became impatient with her, reminding her that I was on a time limit and that every month I was bleeding, more endo tissue was growing inside of me, reducing my chances of being able to fall pregnant. The way I saw it, I had just had surgery in preparation for this, I had changed my diet and lifestyle for this, to enable us to have the family we had always talked about. All she needed to do was stop smoking. 

The appointment date got nearer and nearer, and she had not managed to stop. I was forced to reschedule. This time, I pinned the new appointment letter to the veranda door, so she would see it every time she went out for a smoke and remember what we were aiming for. It didn’t have the desired effect. Instead, she felt that the added pressure was making it harder for her to stop and making her anxiety worse. I didn’t see anything wrong with this behaviour. I was 100% focused on my goal of getting pregnant. 

 

Another appointment had to be rescheduled and I started to panic. We had been together for 7 years, and had always talked about having a family together, and now we were finally ready, or at least I thought we were. I was so ready it was all I could see, all I could think about. The broodiness, the urge to have a child of my own, was overwhelming. It would get particularly strong around the time I was ovulating. I would dream of holding my baby, of nursing it, and wake up physically aching for it. 

 

After the third time I had to cancel the appointment, I didn’t bother to reschedule it. Clearly my motivational tactics weren’t working. I decided that the best thing to do was back off and give my wife time to quit, in her own time. Getting fed up with being in pain all the time, I made the decision to go on birth control to alleviate my worsening endo symptoms until we were ready to try again, and tried to put my broodiness to one side and focus all my energy into my work instead. 

On the inside however, I was fuming that my life partner, who had always assured me that she wanted a family as much as I did, was not as driven as I was when it came to actually making it happen. She knew I had this condition that could impact my fertility and that I didn’t have a lot of time. I began to wonder if she had changed her mind, or whether she was questioning how good a mother I would be due to my deteriorating health. I began to harbour a lot of resentment for my wife, for, as I saw it ‘making me wait for the thing I wanted most’. We began to argue all the time, spend less time together, and a distance grew between us. This, and the constant fear that I was running out of time began to have a very negative impact on my mental health. I became paranoid, had extreme mood swings and fell into obsessive thought patterns. I didn’t realise how unwell I had become. Whilst at the beginning of what I now know to be a brief psychotic episode, I made the abrupt decision to end my marriage and had a breakdown, resulting in a short admission to a psychiatric unit. I was diagnosed with Emotionally Unstable Personality Disorder. 

The following months I was so mentally unwell that I began to struggle to maintain even the most basic level of functioning. Despite remaining on birth control, my endo symptoms continued to worsen, to the point where I was in constant pain. As my pain medication increased, so did my lethargy and fatigue, rendering me unable to retain information or concentrate at work. Alongside the symptoms of my mental illness, I became unable to maintain employment and was forced to stop working. This was a big blow to me, as my job, and my ability to support myself financially, had always been a big part of my identity. 

I was referred for a third laparoscopy with excision, under an endo specialist. This time I was given more information on what was found. The specialist informed me in clear and concise terms that based on the appearance of my uterus, which was ‘heavy and bulky’, she was diagnosing me with adenomyosis, that the endometriosis cells were now so deep in the lining my uterus that it was impossible to remove them without compromising the muscle tissue, and that the best option for me now to be pain-free, would be to have a hysterectomy. 

A hysterectomy. As soon as I heard that word my heart sank in my chest. But I’m only 33. I haven’t had my chance to be a mum yet. I’m not ready. I explained to the doctor that I still wanted to have a baby. She advised that it was still possible for me to conceive as my ovaries and tubes were clear, and to contact her ‘when I felt my family was complete’. I felt the way she put this was both tactful and respectful. She had been honest with me and that had made me feel safe. Reeling from this new diagnosis, and the horrific ‘H’ word, I decided to put the possibility of needing a hysterectomy to one side for the time being and focus on my recovery. I would revisit it when I felt more able to deal with the implications. 

Following the excision surgery, I noticed a significant decrease in my pain levels and was able to dramatically reduce the amount of pain relief I was on, which reduced my lethargy. I was put on medication to stabilise my moods and was awarded disability benefits, which gave me financial stability. I was able to regain my independence and take control of my life again. 

I began to attend social groups, and attended an Endometriosis UK Support meeting, where I met others with this condition, and felt understood by those around me for the first time since my diagnosis. I began to take a more active role by becoming an admin on the Facebook page and training to be a volunteer. This made me feel like I had a sense of purpose again. I wanted to be to others what I needed when I was at the beginning of my journey with endo.