Guest post by Alice Brooks
My body has never really functioned properly. So, as the years passed, I got used to random pains, nausea, fatigue, unstable joints, being injury prone. Similarly, I got used to my extremely heavy periods, which lasted around 9 days each month, accompanied by nausea, bloating, constipation. All just ‘part of being a woman’, I’d tell myself. Being diagnosed with Obsessive Compulsive Disorder (OCD) at age 11 didn’t help either. Every single other symptom was blamed on my poor mental health – so much so that I’d start to wonder if I really was making it all up in my head. I convinced myself that I was an attention seeker, a hypochondriac. When, in actual fact, I was pushing through each and every day with multiple chronic illnesses weighing me down and creeping their way slowly through my body.
I was 17 when things took a turn. I’d been experiencing dyspareunia (pain during sex) for some while, but I’d just let it slide. Then I started bleeding again just days after finishing my period. Not just spotting. I’m talking clots the size of my hand, and a constant, heavy flow, even worse than the periods that I was used to. A few days in, I started experiencing a nagging pain in my lower right abdomen, so I decided to visit my GP. Automatically I was dismissed, told it was a simple hormonal imbalance, and that it was completely normal. But I just knew that wasn’t what it was.
The pain got to the point where I almost couldn’t bear to walk. Even just moving my right leg aggravated my insides that much. I had to go back to the doctors. This time I saw a woman, who again said it was a hormonal imbalance. I said: “No, I know my body! There is something wrong here. I think it could be endometriosis, or perhaps something acute like pelvic inflammatory disease (PID).” But no. I didn’t have a temperature, my STI swabs were negative, so: “It couldn’t possibly be PID!” But the bleeding kept going. The pain kept getting worse. So naturally, I kept going back. I was eventually referred to a gynaecologist, and an entire year later I had my first appointment.
There’s no point in dwelling too much over what happened here, because in comparison to further events it isn’t very important. I was, however, told many times over: “You don’t have endometriosis, not at age 18; there’s no way you have it.” But despite that, she still referred me for a diagnostic laparoscopy (the only way that endometriosis can be diagnosed), so that was all that really mattered to me.
I ended up waiting another entire year for my surgery, so by the time I actually got it I was 19 and had waited two years. I had expected to come out of surgery to either be told there was nothing wrong with me (I guess due to so many people telling me there wasn’t), or to be told I have endometriosis.
I had just come around from anaesthesia when the surgeon came to tell me how the procedure went. I was still in an analgesic daze, so it was difficult to process everything that she was saying. She told me that they had found possible minimal endometriosis, but that the real finding was extensive damage from untreated pelvic inflammatory disease. My pelvic organs were covered in scar tissue and adhesions.
She then proceeded to tell me that the PID had caused my fallopian tubes to become “tortured and clubbed”. I already knew what was coming next. My entire soul left my body, tears started pooling in my eyes and the words “ectopic pregnancy risk” and “difficulties getting pregnant” shrilled through my ears. That day I cried like I have never cried before. Almost as if I was already mourning the loss of a child. I am so maternal, and always have been. I already love my children more than anything in this world. I can already feel them. They are a part of me.
I’d like to note, if I had been taken seriously back in 2017 when I had the heavy bleeding and pain, the doctors could have treated the pelvic inflammatory disease quite easily with oral antibiotics. All this damage, including to my fallopian tubes, could have been prevented. My possible infertility was preventable.
The thing was, I didn’t know for sure just how damaged by tubes were. It was very obvious there was some damage there, but without proper testing I wouldn’t know for sure if I was infertile or just less fertile. I wanted to know. Not only for my own peace of mind and emotional wellbeing, but also so I could be proactive and take the necessary steps – such as freezing my eggs or starting a savings account for IVF. At such a young age though, and without trying to conceive naturally first, the NHS won’t even consider doing fertility tests. So I decided to take matters into my own hands and see a specialist privately. It’s safe to say this appointment couldn’t have gone much worse.
I saw a male gynaecologist who specialised in fertility. I went in and told him exactly what I’d been diagnosed with and that I wished to have a lap & dye test to determine the status of my fertility. Essentially, he said no. No, I will not do this test. This test that you, a consenting adult, are willing to pay for and have a very clear reason for wanting. He told me I was far too young, and that I didn’t need to know my fertility status yet. He said there’s no point in freezing my eggs because IVF will be just as viable until I’m at least 35 (not true?), and wouldn’t stop banging on about how there’s no point in worrying about my own fertility status, because I don’t even know the fertility status of the man I’m going to have children with. The audacity! This is not about a man – this is about ME! I then of course started crying; I don’t think I know anyone who wouldn’t have. His response to this was: “I think you need to see a psychologist.”
It has now been a year since that appointment. There have been points where the fertility issue has slipped to the back of my mind, but there have been many weeks where I cried myself to sleep every single night, thinking about the heartache I may have ahead of me. Despite the scar tissue being divided during my surgery, I still experience severe symptoms almost every single day. Pelvic and rectal pain, dyspareunia, dysmenorrhea (painful periods), bloating, constipation and nausea, lower back pain, urinary issues, ovulation pain and many others.
I recently made the decision to seek out a different private gynaecologist to enquire again about getting a lap & dye. I discussed this with my GP, my psychologist, my friends, my family, and they all agreed it was the right thing to do. I chose a female consultant this time, with a clinical interest in endometriosis and fertility preservation.
I had my consultation a few days ago, and to be completely truthful I am still in total shock. I had come to terms with my diagnosis and the outcome of my surgery a very long time ago. I wasn’t going to see this doctor to challenge that, I just wanted further tests for my fertility. I cannot believe how grateful I am that I chose this doctor. I have finally been taken seriously. I have finally found someone who is an expert in this area and genuinely wants to help me.
The appointment ended up being something entirely unexpected. I took in my file from my last surgery, which contains all the pictures taken during the procedure. The consultant took one look at these pictures and was completely shocked, and very confused. “That right there is a deep infiltrating nodule of endometriosis. Over here, deep peritoneal pockets of endometriosis,” she explained. Rectovaginal endometriosis. Endometriotic adhesions. Ligament malformation caused by endometriotic scar tissue. I am literally riddled with it. I started this week thinking I had endometriosis that wasn’t even bad enough to be classed as stage 1. I am ending this week with the knowledge that I am a 20 year old with stage three to four endometriosis.
In a few weeks I will be going under general anaesthetic for endometrial excision surgery. It’ll be complex and is highly specialised. But I have so much trust in this doctor and I know that, without this treatment, many significant complications could occur. She also was more than happy to agree to do the dye test during the procedure, so I will finally have an answer about the damage to my fallopian tubes.
However, I am now faced with the fact that I have another condition, which could also very much affect my fertility. At least now I know that I can be proactive, and do all I can to ensure I will have children when I feel ready to do so. I can do what I can for my future self, and then I can come to terms with all I’ve been through. I can learn how to love my body, despite just how broken it sometimes feels. I can be gentle with myself. I can find peace.
You can find Alice on Instagram @alicebrooks_