Endometriosis- Alice's Story

• What were your first symptoms? 

 

I would say my heavy periods. Whenever I was on my period, I had to go to the toilet all the time and it was so painful. The second I needed to go to the toilet it was instant abdominal and pelvic pain. That’s when I went to the doctors and said it's not just when I have my period, it's now all month that I'm in pain. Doesn't seem to matter what I do, whether I'm bleeding or not, I'm in pain. That’s when they sort of picked up on the fact that it could be something more. 

But when I look back on my life, I realize that for a long time I thought I had IBS. There was no suggestion to any of my doctors that I do have IBS. So that makes it clear to me that what I was experiencing all this time was actually related to endometriosis. My doctor just didn't know it. It was just slowly building up. 

 

 

• When did your symptoms start and when did you get diagnosed with endometriosis? 

 

Looking back to when I started my periods at about 12 years old, they were really heavy and really painful. I went on the pill at 14 to manage my hormonal issues, because I was a raging hormonal teenager and had bad acne. I always had a lot of food sensitivities and would get ill quite a lot, which is why I thought I had IBS. When I was about 23/24, I would get really bad bowel symptoms whenever I had my period. It was very painful to go to the toilet. So, I went to my GP to see if it was IBS related. My GP gave me a pain patch, which is like a stick-on plaster that slowly gives you pain relief. You can put it anywhere in your skin, I had it on my legs and sometimes on my abdomen. It was hard hitting, so that took a while to get used to. 

But it wasn't really helping with my symptoms. At this point the pain wasn't just during my period. It was every single day. Even just going for a wee, I was in absolute agony. It was at that point that my GP said it might be endometriosis. I'd never heard of that before, I didn't know what it was. I then got referred for an ultrasound, which revealed that I had cysts on my ovaries. So, I was referred to the hospital and the surgeon told me I needed laparoscopic surgery (keyhole surgery). The waiting list for that was 18 months. 

But my symptoms just kept getting worse, I was so bloated that I looked six months pregnant all the time. I put weight on, which wasn't something I'd really experienced before. I used a walking stick and a wheelchair at times because the pain was just so bad, it was just radiating through my body all the time. I just thought, I can't keep living like this, it’s just not working. 

 

 

• So what was the next step towards getting your surgery? 

 

I decided to go private. I started doing research online and found another endometriosis clinic at Spire Hospital in Cambridge. I had to get another ultrasound and an MRI. They found that I had cysts on both ovaries and a chunk of endometriosis tissue between my uterus and my bowel, which led to them fusing together. That's why I was in so much pain when I went to toilet because they were just tugging at each other and not able to move. I also had endo tissue on my kidney tubes and bladder. Because of this, I had to have a urologist, a bowel specialist and an endometriosis specialist at the surgery. Leading up to the surgery, I had to take the last six weeks off from work because I was so unwell. I couldn't get out of bed because I was in that much pain. 

There are two types of surgery that you can do: ablation and excision. There’s an important distinction between the two, they describe it as if you have a weed in the ground. Ablation cuts the top of the weed off but leaves the root. Excision digs out the whole thing. When you're looking for surgeons, it’s important to find out what techniques they use. If you have ablation, you are just damaging the surface level, and it will just grow back quickly. Whereas excision is a more effective treatment because you're getting rid of more of the tissue. 

I had the surgery in 2023. They did a good job, and they were able to get a lot out. My left ovary, which was the one that was always more painful, was literally just black with these cysts. You couldn't see any of the organ, it was just black. 

 

 

• How long was the recovery from the surgery? 

 

I'd say it was probably an eight-week recovery time, from being completely bed bound to then being able to get up, go to the toilet and leave the house on my own. But I think the overall recovery, until I started feeling like a human again, was probably about a year. Because there was just so much done, so much was taken out. Also, because it's an inflammatory disease, the swelling can take months to go down. Even if you're feeling a bit better, your body is still healing. So yeah, it did take a long time. 

 

 

• Has the surgery made an improvement? 

 

It's made an improvement. It's not painful for me to go to a toilet anymore, which was one of the biggest symptoms I had. So yeah, the surgery has helped, because I am able to function day to day and I can work. I was not functioning every day before the surgery. Now I’m taking Meloxicam, and I've been on that for a while. That’s been great, because it just reduces the inflammation, so that's been helpful. But if I didn't have my medication, I'm back to square one. It’s still just as bad, really. 

It all just depends on the outcome of the surgery. I could have had that surgery and been in more pain afterwards. There are no guarantees with it, because it's such a complex disease. I truly believe I had the best of the best working on me at that time. 

 

 

• How are your periods now? 

 

I don't have periods because I just take my pill continuously. The only time I will have a break is if I start getting breakthrough spotting, then my body's telling me to have a break. But the trouble with that, for me is that my periods are still really bad. They are horrendous. I get bloated and it hurts to go to toilet. I literally can't work if I have it, so it's a conscious choice for me to always take it. My pills just mask everything. That's all it's doing. 

 

 

• On an average day, how much medication are you taking? 

 

Can be 6 different types of medication and on a bad day, it can be 12 upwards. 

 

 

• Is there anything that causes are flare up for you? 

 

Sometimes it can be caused by something I’ve eaten, or too much alcohol or caffeine. But I also have anxiety and if I’m stressed or upset it definitely makes my symptoms worse. So, it’s important for me to manage my mental wellbeing as well as physical. 

 

 

• If you're having a bad flare up, how do you cope? 

 

I take Buscopan as well as Co-dydramol, which is a pain killer that I find works a bit better for me. However, there are a lot of problems with these strong pain medications. So, god knows what it's doing to my body, but it's the only way I can cope. It's prescribed, but again, I try and avoid too much usage. There’s a girl I follow on Instagram and she's just on morphine, because that's how bad it is. She needs it is most of the time, because she's in pain most of the time. So, yeah, the pain management options are not great. 

 

 

• What was the hardest part about having endometriosis? 

 

The hardest thing for me is I used to play roller derby, go running and go to the gym. I wasn't a fitness fanatic, but I exercised. I haven't been able to do any of that because my fatigue levels. As well as nausea, headaches, leg pain, a whole myriad of symptoms. I just don't have anywhere near as much mobility as I used to. That’s been the thing I've been most sad about, not being able to exercise like I used to. There's been so many things that have I've lost because of this disease. It's not just “I've got a bit of a sore tummy today”, it affects every aspect of your life. I’ve had to cut so many different things out of my life, because I just can't do it anymore. I don't have the body for it, and I'm not even 30 yet. That takes a toll on you mentally. Having to adjust to what you're able to do now, and the grief that you feel for your old life is a massive thing as well. 

 

 

• If you had the chance to give your past self any advice, what would you say? 

 

The first thing I would say is, don't feel guilty for managing your pain in whatever way feels right for you. If the pain medication isn't working, go back to the doctor. Don't feel guilty about causing an issue or making a fuss because you're suffering. If you're still struggling, go seek another opinion. You have every right to seek another person's opinion if you don't agree with what the doctors told you. You have to prioritize yourself and your wellbeing. Don’t force yourself into going out and seeing people if it's going to make you feel ill. Don’t put that pressure on yourself. 

I think as well, leaning on the people around you and again, not feeling guilty for that. Ask friends to help and ask family to step in. There’s no shame in it. People love you and they want you to be well. So, if someone offers to do a food shop for you or something, then take it. Don't feel guilty about that. 

I've just spent so much time feeling guilty about so many things. Looking back, I think, what's the point? Why do I make myself feel guilty about something I can't help? I didn't ask for this, I was literally born with it. It’s just the reality of my life and I’m learning to come to terms with that. Accept that about yourself, without feeling guilty and without punishing yourself. 

 

 

• Are there any support groups, charities or social media pages that you would recommend to anyone suffering with endometriosis? 

 

There’s a Facebook group called ‘Nancy's Nook’. I also started following a podcast recently called ‘Chronically Chill’. There's a lot of Instagram accounts that I follow like; ‘in16yearsofendo’, ‘endometriosischlo’ and ‘just_another_endo_warrior’. I like following people that share their own experiences, not just day-to-day, but their surgery experiences as well. Those are all great accounts, not just for awareness and understanding the disease, but also for comfort. Knowing that they've been through it. They get it, you can message them, and they'll answer your questions or help you out. So, yeah, I think that has been the biggest help. 

 

 

• Is there anything else you would like our readers to know? 

 

It’s just so important that people talk about it, especially this awareness month. A lot of people like to call it endometriosis action month because that’s what needs to happen. We need things to actually happen and action to be taken place. Let make things happen and not just talk about it.