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My Life with Endo

I am not sure where my life with Endometriosis started as it feels like it has always been a part of me. I always struggled as a teenager with periods and I would often not be able to go out or go to school. I do however remember explicitly when it took over my life – June 2012. At some point in June 2012 I first collapsed in pain. I was 26 years old. My periods were becoming more often and more painful and I bled for around 3-6 months with no break. I had made several appointments with my GP. She dismissed me each time as “women have pain during periods.” After around the 4th appointment with her she then said “…you could have miscarried, but it is likely over now, you should start to feel better.” I did not start to feel better. By the end of June 2012, I was having excruciating cramps every day. My cramps felt like someone was scraping my insides with a hot serrated knife. It was agony, I literally had to hold on to the walls to steady myself. The pains came in waves. I ran a bath and called my mum who said she was on her way round. I got out the bath as I felt dizzy. The pain was now so bad that I could not put one foot in front the other without a stabbing pain. It took my breathe away and I could not even cry. It took every ounce of my concentration to not black out. I got to the bottom of the stairs and everything then went black. I woke up on the sofa with my mum calling 111 (NHS helpline). They said it was a non-emergency, so best to stay home. I felt like a nuisance and like I just couldn’t handle my period. I would like to say that that was the worst experience with endo but that was only the start. On 6th August I collapsed at work in the ladies’ toilets with blood pouring down my legs. I worked with all men at the time and I used my phone to call my manager to come help me and I was rushed to hospital. I was diagnosed by ultra sound only because I had endometriomas (blood filled cysts) so big that it showed on ultrasounds. I had ‘kissing ovaries’, which meant they were touching each other. One of the cysts had ruptured. I have since learned that it is hard to see endometriosis on ultrasound unless it is big enough and the sonographer is a specialist in endometriosis. I was injected with Zoladex, which I was told was standard treatment in endometriosis and told to wait for an operation to remove the endo in December.

I have had Zoladex and Prostap injections at different times, which are hormonal treatments used for endometriosis. For me they worked in a sense as the pain was often less, however the side effects were awful for me. I was more anxious, had insomnia, sweats, hot flushes, mood swings, angry, and generally not myself. I have been asked to try these again recently, but I have refused due to the side effects. I had in total 3 operations in 4 years at 3 separate hospitals, I was eventually diagnosed with stage 4 endometriosis, adenomyosis and chronic pelvic pain. I was told I would unlikely conceive naturally. The emotions I felt at not having children were not describable, I gave up hope and I felt lost.

My aftercare and support after each operation was minimal. It is a lonely place being diagnosed with endo. Maintaining a social life and friends is almost impossible. Well it was for me. I felt like no one wanted to hear my endless weird side effects or non-stop pain and constant hospital appointments. Not to mention the amount of times I had to cancel on people because I was bleeding too heavily, or I was collapsed in a ball on my bedroom floor crying and holding a hot water bottle. Chronic pain is a never-ending torment that I wouldn’t wish on anyone. I don’t think ‘healthy’ people can understand how something that is to do with having bad periods can make you have pain every minute of every day (at least in my case this is how it is). The endless cycle of different medications robbed me nearly of my sanity. I think I have tried every pain killer available in the UK but for me some of the stronger pain relief was the worst. I was like a zombie for want of a better explanation. I was making mistakes at work, I could barely stay awake anywhere, I kept feeling crawling sensations over my body. When I stopped taking the opioid medications, I didn’t do it in a controlled way and I do not recommend this. I just stopped. I hallucinated, I was hysterical, sweating, it was not pretty. My boyfriend didn’t know what to do so we went to the GP and he said this was withdrawal from an opioid addiction. I had never been addicted to anything before – I never even smoked. Medication has been one of the hardest things to get the right balance with in my life with endo.

One of the symptoms I have which is a surprising one to a lot of people is nerve pain. I have had nerve pain since my second operation. I don’t know if it is damage from the surgery, the endo itself or the medications. The nerve pain is constant and sometimes drives me to point I just want to chop my lower limbs off to just feel a relief. The best way I can describe it is like having a toothache in your lower back/bottom and running all the way down the back of your legs. I think sometimes it is like a thousand tiny men hitting my nerves from the inside. I have never found relief from the nerve pain. Some medications help but it never seems to go completely. Hot water bottles and baths are the only small relief. I also have pain around going to the toilet. I cannot hold my toilet, or I will get pain up inside and down my legs and I might not make it in time. This causes me a lot of anxiety and is not one you want to talk about to most people. Sex is not one most people don’t want to talk to anyone about either but it a real problem. A lot of women with endo seem to have pain during sex and this has been something I have had an issue with. It does sometimes improve, and other times is impossible. It can also spark a flare up that can last days, sometimes I just get too anxious that it will hurt, and it is not worth going through. This can cause a lot of problems in relationships, but I am fortunate enough now to be married to my best friend who is very patient and understanding.

Living with daily chronic pain is hard. I could not keep up with my work. I left my job after a couple of years. I wasn’t exactly pushed out, but I did feel I had no future with the company and like I was resented. I felt people were getting frustrated. I think it is known as sympathy fatigue, people literally got fed up of being sympathetic. This happened in all my relationships, work, family and friends. I think it is hard to still give sympathy to someone who always seems to be complaining they feel ill, especially when it looks like they are making a fuss of having bad periods. You do learn when chronically ill that the people who stick by you are the ones who mean the most to you and who you never take for granted. I can almost accept the average person not understanding the illness but an illness that affects 1 in 10 women should in my opinion be more understood in the medical profession. I have had GP appointments where I have to explain what endometriosis is. It is isolating and there is not enough support (more now with Facebook groups) I think I was diagnosed for 2 years and had had 2 laparoscopic surgeries before I discovered there were support groups online. The online groups have been a life line. The support groups taught me that when you have stage 4 endo you should be referred to specialist endo centre within the NHS. I had no clue of this, no one medically has ever mentioned this

I have learned the hard way that I cannot push my body through the pain – I have limits. I need to pace myself now. I plan things out and do things in stages or I don’t do as much. I do still go on holiday and to an outsider I guess it looks like I still do same things. However, they do not see the flip side to those holidays. A photo doesn’t tell the whole story. On my 30th Birthday my boyfriend took me to Rome. I took all my medication, my heat patches that I wear under clothes, we planned what we would do. Once I was there and in that amazing city, I got carried away. I visited the Vatican despite already needing to rest. We were half way around and I was in so much pain I had to sit on a windowsill, I then passed out. I woke up with Vatican guards around me rushing me to an ambulance and taken to hospital. My boyfriend used google translate to explain it was endometriosis. To the outside I had a lovely break away for my birthday, but you don’t take the pictures of being rushed to hospital.

Not long after collapsing in Rome, I was referred to the UCLH in London and had my 3rd surgery in November 2015. During this surgery they found a lot of endo and my organs stuck together. I was in surgery around 5 hours. The recovery to that last op was hard. Really hard. I was exhausted, it hurt when I did things and it was slow. I moved in with my boyfriend who was very supportive. I don’t think I could fight this daily fight without the support of him. I was referred to the pain clinic and put on duloxetine. I then had a couple of months with low pain but extreme tiredness. In the August of 2016 I got a sickness bug and was poorly, I was late with my period. My mum was insistent I should take a pregnancy test after 2 weeks of being sick and I eventually gave in and took one. I was pregnant. There is hope. I did 3 tests to be sure and I was 100% pregnant. I have been told time and time again by gynae consultants that pregnancy ‘cures’ endometriosis, but on the other hand told I was unlikely to conceive which is confusing. One surgeon told me my best treatment would be to ‘stay permanently pregnant till menopause’. I can tell you that with 100% certainty that pregnancy does not cure endometriosis, nor, in my case, relieve symptoms for any time. I was so happy to be pregnant and I would never take it for granted and I would go back and do it again despite the pain. I wish I had been prepared for the fact it was painful and that it didn’t mean I was miscarrying. I had cramps from around 4-5 weeks that were excruciating. I went to A&E 3 times and my partner was concerned. I was continually told it could not be endometriosis during pregnancy. I am not saying it was endo as I don’t know but I do know that I had pain, every day but was worst in the first trimester. By the 3rd trimester the pain changed and was more in my hips and back. I could barely walk and was diagnosed with SPD which the physiotherapist thinks could have been partly due to my pelvis being weak after surgery. I had to have more scans due to the pain I was having, although I was told I could have a natural birth. I gave birth on 6th May 2017 in the morning. The end of the birth was not ideal as I was in labour for 36 hours and I did not have the strength or fitness I needed. My baby got in distress and I had a forceps delivery and lost a lot of blood but we both went home a couple of days later.

A different phase of my life with endo started after I gave birth. I was now a mum. I am not going to lie, being a chronically ill mum is hard. A whole new type of hard. I have also suffered a lot with my mental health, partly due to being chronically ill and partly other reasons. I feel like I fight through each day. Don’t get me wrong, I am so happy I had my son, I treasure him so much more as he was such a miracle, but I still cannot take my chronic pain suit off, leave it at the door and be a healthy mum all the time. I have to live with it and the pain and still smile through the pain and play, change nappies and feed my son when I want to sometimes scream, cry or just lie down. It’s hard coping with the added problem of no longer getting a full night sleep. I also chose to breastfeed which at first helped as my periods didn’t return till around 6 months, but I could also not take medication I had previously been on. I fell into a mental health hole the first year of my son’s life and I found it very hard to be the same as other mums and to go to baby groups and pretend there wasn’t a hot spiky fire ball in my pelvis that I carry around. I often cancelled on other mums last minute as the pain was too high. I sobbed on the floor of my son’s room at times when it got too much. I have a lot of pain when needing the toilet and when my son was younger this was very traumatic for us both. I used to have to pick him up or take him out of his baby bouncer or high chair and take him to the toilet several times a day at speed and usually with both of us crying. Even now when we are out, I have to dash to the toilet urgently and whisk him off quickly with me. This is not an easy task with a toddler. We both get stressed out and there were quite a few months where I did not really leave the house in fear of not making it to the toilet in time. If my endo was flaring, I was scared I would collapse outside with my son. I stayed home. I even made my husband call me every hour in case I collapsed at home. My anxiety shot through the roof. I have had a number of occasions where I have had to call my husband to come home or someone to come help as I am dizzy with the pain. I remember an incident when my son was just 2 years old and my husband was on his way home because I had a terrible flare up. I shut the front room and made it safe and lied down with my son playing. I told him daddy was on his way and to stay here with mummy, my husband was on the speaker phone to me and I tried to stay alert and talk to my son. I was even at one point holding on to my son’s trousers so I knew he was there with me. My son could talk by 2 and he said ‘its ok Mummy, I will make you better’ and he often gets his medical kit and gave me the toy medicine and stethoscope. Bless his little soul. I feel sad for him but also so proud that he wants to help me. Maybe I will inspire him to become a doctor. It is really hard to be a poorly mummy, the endless guilt of all the things you cannot do that the other mums do but on the flip side it also slows my life down so sometimes I can truly appreciate how lucky I am to have my family and to watch my son grow and be just the most amazing little being. You have to find the rainbow in the rain cloud.

I finally now have support in place to help me, things are slightly better. I have a key for disabled toilets when I am out. I have a blue badge so I can park quickly and near a toilet so I have more confidence to go places. Most importantly I have now got over my shame and can ask for help. Now I am not so sleep deprived I am trying to help myself again. I am going to physio and looking at alternative health treatments and starting to change my diet and manage things that way. It has taken me over 7 years to accept that I have endometriosis, but it does not define me. I can still be me, just with some adaptions. I am now seeing positives for the first time in a long time. I am not giving up hope that treatments will improve with the more of us that speak up about life with endo and how many of us there are. There needs to be more research, more money spent and new things to try. My advice to someone newly diagnosed is to get yourself informed. For warned is for armed – I think is the saying. I wish I had known before what I know now. Read the books, there are lots of recommended ones. Join online communities for support. Talk about your experiences. Don’t just accept the first thing the doctor or the consultant says. Request specialist help from doctors, general gynae doctors are not the best ones to treat us. Request a women’s health physio – get someone to assess you all over. I have since discovered a lot of the pain can be down to pelvic floor issues and bad posture. We adopt bad habits and bad posture because we have the pain from endo, which then feeds in to other problems. I would also say if you want a baby to not give up hope. There is hope. Stress will make that situation worse. Find time to relax and find strategies to make things easier. If I have to go out somewhere, I always plan and I take those heat patches on me, they are like having a stick-on hot water bottle. I also don’t wear tight clothing and make sure your shoes are comfy. Remember to keep hydrated, being dehydrated makes our pain feel worse. These are such simple things it took me years to work out. Always stay open minded, you never know what might make you feel better and someone might suggest something you wouldn’t have thought of that actually helps.

Note. This is taken from something I wrote in 'Endo & Me' by Kathy Edwards. This was my contribution about my personal experiences but the book is great to read about lots of different stories of people and their endometriosis stories...

#endometriosis #endosisters #endowarrior #endopain #livingwithendo #periodpains #mentrualhealth #periodhealth #prostap #zoladex #chemicalmenopause #endolife #iamoneinten #iam1in10 #1in10 #endometriosisuk #adenomyosis

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