Stories

We love to tell the stories of Endo Warriors, so if you want to share your stories with the people that access our page please get in touch on endosouthcoast@gmail.com.

Alex

Alex

aliesha

Aliesha

Beth

Beth

Holly

Holly

Ashleigh

Alex

Alex
Alex

Hey, my name’s Alex and I’m a transman with endometriosis.

I’ve had symptoms for over a decade but I only started my journey to a diagnosis at the beginning of 2021.

It’s believed I have Stage 4 endo due to its effect on my other organs but I’m still awaiting my diagnostic laparoscopy.

When I began to research endometriosis, I was overwhelmed by gender dysphoria because all the charities, doctors and the community focus on it being a ‘women’s disease.’ This meant I was constantly being misgendered while trying to educate myself on my illness. Even the medical professionals who knew I was trans were misgendering me to my face. The exclusion of trans people in the endo community led to me feeling incredibly alone and the escalation of my gender dysphoria massively affected my mental health. Over time, as my endo symptoms worsened, I was rejected and ignored by colleagues who knew I was a transgender man because they believed I was too weak and too sensitive to be a “real man”.

I created my Instagram page, @trans_endo_chronicles, to provide a safe space for other trans, non-binary and intersex people with endometriosis. I’m also using my platform to encourage the use of gender-inclusive language within the endo community.
I believe the medical and endometriosis community need to unlearn the idea that endo is a ‘women’s disease’ and adapt their vocabulary to include trans, non-binary and intersex people with endo.

I have also found that medical professionals expect me as a transman to want a hysterectomy and have even suggested it as a ‘cure’ to my endometriosis. This is incredibly problematic; not all transmen want or can have a hysterectomy or bottom surgery. In addition to this, there is NO CURE for endometriosis and a hysterectomy could lead to endo growing elsewhere in the body because endo is a whole-body disease.

To any LGBTQ+ people beginning their journey to an endometriosis diagnosis or suffering from gynaecological issues, I understand how daunting this is but you’re not alone and you will find others in the community who can relate to what you’re experiencing.

Aliesha

The beginning

I first had symptoms at around 15 years old but always assumed the things I was feeling were just how everyone feels (my friendship group never discussed periods). I went to the doctor for an unrelated issue at 19and happened to mention my intense pain and crazy heavy bleeding. He was the person to mention that he didn’t think that it was normal and needed further exploration, which is a very lucky position to be in compared to a lot of other people I know, as their GPs often dismiss their symptoms as “women things” or IBS. Every single person has different symptoms and this is why it is so hard to get a diagnosis.

My own personal symptoms were :

❖ bloating that made me look 6 months pregnant that was also painful and felt like there was an elastic band around my stomach

❖ really heavy bleeding on my period, (using 5-6 pads a day and 1 or 2 at night) bleeding other times of the month, sometimes for the whole month,

❖ intense period cramps that standard painkillers didn’t help,

❖ lower back pain and stomach/womb pain at other times of the month.

❖ Nausea all the time.

aliesha
aliesha
aliesha
aliesha

I went to the GP about a totally unrelated issue and was lucky enough for him to hear about my other symptoms and recommend I go to the Gynaecology department at my local hospital. Thus begins the middle of my journey and this story. Everything below is my own personal experience and was also experienced whilst working at least one job, studying for a bachelor’s degree and a Masters’s degree and attempting to have some quality of life.

I was referred to Gynaecology and I am fortunate enough to fall within the radius of a BSGE-accredited endometriosis centre and therefore have access to specialist Endo nurses and surgeons (although there are very few). Before my first surgery in 2017 I was swapped onto multiple different contraceptive pills, told I was TOO YOUNG at 23 to have endometriosis (even though I know 18-year-olds with it), had multiple internal and external scans and had a coil fitted. All treatments recommended for endo are hormone related and this has major impacts not just on your own life but family, partners and sometimes friends. I persevered with the coil for 15 months almost and after pleading multiple times to have it removed, they finally put me on the surgery wait list and agreed to remove the coil at the same time. The Mirena coil may work for some, but managing and treating endo is so specific for each person. Unfortunately, it made me chronically angry, and depressed and made all of my other symptoms 100 times worse. My mental health (like many on hormonal treatments) took a massive hit, especially as I went nearly a whole year bleeding every single day. When I went back to the hospital just before signing the papers for surgery I explained how important fertility was to me as I wanted to be able to plan ahead, but this illness comes with a lot of uncertainty. The uncertainty among other things definitely takes a toll on your mental state, to be constantly in pain, bloated, nauseous, and sleepy. To be constantly not knowing what is wrong with you, questioning whether in fact there is anything wrong with you at all. To not know whether you can have children. The toll it takes on relationships is indescribable. I have heavily relied on my partner to cheer me up, make me hot water bottles, take me to scans, blood tests, and surgeries, and listen to me worry and cry. It affects my ability to have a social life (some days more than others) and affects my energy levels because I’m always exhausted. These things are hard for me, let alone for another person and the support I have had has been unwavering and so vital. This support continued when I had my first laparoscopic surgery in June 2017 and they found stage 1 and 2 endo (not deep infiltrating) as was briefly explained to me in an anaesthetic haze. This was my “official” diagnosis and therefore made finding a treatment plan easier.

However, I still wondered about how this affected my fertility and my life in general. I was then discharged from the hospital and they sent me on my way.

However, my symptoms didn’t really improve and I ended up making my way back to the GP to be re-referred. To be able to send me back to the hospital I had to undertake a 4-month diet change, to ensure that my symptoms weren’t being caused by a food intolerance (they weren’t but I did learn I can’t tolerate much onion). After all of this, I was sent back to the Gynaecology department.

After being referred back to the hospital and seeing a different consultant (who was also going to be my surgeon), I was told that during my first laparoscopy they didn’t remove a large stage 3 nodule of endo from nearby my bowel and I therefore needed this removed. I was then put on the waiting list for my second surgery and we discussed a treatment plan in the meantime. The wait time for surgery was between 3 and 6 months and I ended up waiting nearly 10. During the wait, it was agreed that I would put myself into a chemically induced menopause by having a 4 weekly injection into my stomach to reduce my pain and bleeding. At 26, whilst working full time and studying part time this was a big undertaking but it definitely helped my pain levels. However, I was nauseous every single day and night, I lost my ability to remember (and a year later still struggle) and I had intense brain fog where I couldn’t think of words or even get them out of my mouth.

In September 2019 I finally had my second laparoscopic surgery after a day of bowel prep (not the best experience of my life) and they removed the large nodule and other patches of endo that had grown within the last two years.

Beth

Beth
Endometriosis

I started my period later than most, at 13 years old, most of my friends had already hit that milestone in life, and I was so excited to have finally reached it myself, not knowing what was to come. My periods were always pretty heavy and painful, and I would often have to take time off of school to manage my pain & bleeding during the time of the month. My cycle was also not very regular, but I wasn’t very educated on what was or was not normal.

My mum took me to the doctors numerous times and each time I was told ‘its normal’ ‘all girls get cramps’ or ‘it will settle down, you’re only young’. By the time I was 15 my doctor put me on the pill to help regulate my cycle and to help minimize the bleeding and pain.

This had a detrimental effect on my mental health, which was already very much an issue for me. So I eventually decided to stop taking the pill. The real issues started when I became sexually active, sex was so painful and was not enjoyable like everyone else was telling me it should be.

I felt broken and I didn’t know what was wrong with me, but I was too embarrassed to seek advice as I was only 15 when I first became active, so I just stopped having sex.

When I was 16 I was in my first proper relationship, sex was painful, and my periods were excruciating, but I just thought it was normal and continued on as normal, I had the implant fitted and bled for 18 months without a break until I finally pushed to have it removed. I then fell pregnant.

Being as young as I was I had been easily pressured into having a surgical termination at 13 weeks, which was not a choice I would have made without the pressure to do so. However, this was when my symptoms really started to elevate. Every month I was bed-bound for 2 weeks around my period. I had to drop out of college as I couldn’t keep up with the workload and fell behind every month.

I would be doubled over in agony unable to walk or stand straight, I was being sick and passing out in pain and I was bleeding so heavily that I would soak through maternity pads within 20/30 minutes.

After numerous visits to the GP I was finally referred to the gynae department. I had my first laparoscopy when I was 18.

The surgeon was the same surgeon who had previously performed my termination the previous year. After my surgery I was told that “everything looked normal” and the doctor told me that because she had done no damage during my termination that my pain must be psychological, I was told to seek a psychiatrist for help to grieve for my baby. The surgeon told me that my pain was not physical but mental, when I grieved, my pain will stop. I spent the next 4/5 years going back and forward to the GP with new symptoms, pushing for someone to just get to the bottom of my pain. I was repeatedly referred for scans and tests and blood tests, poked and prodded & sent from one place to another. I was ‘diagnosed’ with IBS, kidney stones, and water infections. And once, upon one of many visits to A&E, a doctor noticed I had a tattoo on my leg and I was even told my pain was a result of being allergic to the ink in my tattoos. But the most common ‘diagnosis’ was that it was psychological pain, resulting in me spending many years on and off an array of different antidepressants.

Finally, at 22, me & my partner at the time were trying for a baby, and had been trying for over a year, and my doctor referred me back to gynae, at this appointment I was seen by the same surgeon who had done my first laparoscopy, and she refused to reinvestigate so she referred me to Dr Tsepov who I was told ran the ‘pelvic pain clinic’.

I finally had my second laparoscopy in May 2016, and Dr Tsepov found excessive deep Infiltrating endometriosis on my Uterosacral Ligaments, both of my fallopian tubes were blocked significantly, & my left ovary was stuck behind my bowel. I was not once explained what the diagnosis of ‘endometriosis’ meant, but I was told that the likelihood of falling pregnant naturally was very low, and I was referred to a fertility clinic to start the process of IVF treatment, and also put me back on the waiting list for more surgery to have excision treatment, because he could not clear up enough of the Endo during the surgery he had just performed. I, fortunately, was very very lucky and shockingly fell pregnant naturally 6 months after being diagnosed, so I didn’t get to have the excision surgery. My pregnancy was difficult, & painful, but normal and I had a healthy baby without complications.

However, it was not long after giving birth that I was reminded about the hell that my periods caused me.

Given the fact I had not long given birth, my GP was reluctant to re-refer me back to gynae until I was at least 6-8 months post-partum.

By this point I could barely lift my baby out of her bed on a bad day, my pain was flaring up outside of my periods, I would lose blood clots the size of oranges, I was severely anaemic, I was passing out in pain again, and my tummy would swell and bloat so much that I had to continue to wear maternity jeans because I couldn’t comfortably wear anything around my tummy. I was finally re-referred back to Dr Tsepov, and in the meantime, I found a support group ran by the charity Endometriosis UK. This is where I first met Jodie Hughes, who is now the chair of trustees at Endometriosis South Coast.

Jodie has been absolutely fantastic, at not only being a very dear friend to me, but she has also been amazing with helping to support me through my journey, learning about what ‘endometriosis’ means. She has guided me with tips and advice on how to advocate for myself and to push for better care in treating this chronic illness. Jodie has also educated me & helped reassure me that I am not alone in what I go through and that I am definitely not alone with the long process & journey that is getting a diagnosis. I finally had my 3rd laparoscopy & excision surgery in May 2019. I do still suffer, and I have terrible flare-ups but I have found that knowledge is strength, and I am learning many different ways to help myself to cope with my pain & the many other symptoms that I face.

My journey is not over, but I do feel a little more at peace with the diagnosis, and I am confident that I will be able to manage significantly more going forward with the support and knowledge that is available to me, provided by the Endometriosis South Coast charity & support page.

No one believed me, at any point, and everyone told me to stop exaggerating and work through it.

Holly

I have endometriosis, adenomyosis and poly-cystic ovaries.

At 12 I saw my GP because my periods were so heavy and so painful I couldn’t cope.

I’d have to wake up numerous times during the night to change because even super tampons and pads and towels weren’t good enough. I could barely walk from a few days before to a few days after, the pain was so bad. My mother said it’s because I’m young, it’ll get better. My GP said I’m young it’ll get better. I was offered nothing.

I remember crying in year 8 French class because I wasn’t allowed to go to the nurse and I wasn’t allowed to go to the bathroom for a second time, even though I genuinely needed to change twice in that hour, and I was in so much pain.

Pain and hormones mean it’s so difficult to control emotions, especially when you’re 12 and no one cares.

I think I was 13 or 14 when I got a scan that showed polycystic ovaries. I was told there was nothing they could do, it was an explanation I guess, but nothing to help.

I was told I’d probably struggle to conceive children, but there would be drugs to help with that if I need them. So even as a child, my fertility was deemed so much more important than my pain and suffering. It took until I was 16 to be allowed to go on the pill. That did help a bit, with the bleeding at least. I still had cramps though, most of the time, so I was diagnosed with Irritable Bowel Syndrome. The tablets for that made me so ill, I was convinced that wasn’t the problem, and I recognised the pain of period cramps.

Obviously, no one believed me.

Holly

My parents and my doctor all called me a hypochondriac and to get over it. My mum told me it was just hunger, my dad told me it was because I didn’t eat enough fruit. The nurse then came into school to do our lecture on periods and said that exercise cured cramps. It doesn’t, it makes them worse. Maybe it actually helps other people, I hope something does, but sometimes my cramps are so bad I can’t even sit up by myself. I constantly try and keep an active lifestyle, regularly I just can’t because of the pain. Exercise does not help my cramps, I’m pleased if it helps others, but it makes mine much worse. Not that that nurse, my mum, my PE teachers or my doctors believed me. There’s a theme here, no one believed me, at any point, and everyone told me to stop exaggerating and work through it.

When I started work it caused so many issues. My first job, in a care home, called me in a few times over my absences, I could explain the symptoms, but I couldn’t give a diagnosis, they called my explanations excuses so many times. I felt like I had to just take it, it was a professional job for real adults, I was 18 and not really capable of openly disagreeing with any authority figure. This continued throughout my working life, never kept a job too long, eventually I’d be let go, sometimes they admitted it was due to my absence, other times they tried to cover it by making up a reason that didn’t really make sense, but I was also too tired to fight it. Luckily I now have a job with a very understanding manager, but my probation was still extended due to high absences, and I have also missed out on advancement opportunities for the same reason.

At 24 I was finally referred a gynaecologist. She suspected endo immediately and I was booked in for my first laparoscopy. I was told small amounts of endo were removed, and it would be unlikely to grow back. I still don’t know where it was removed from or if it was ablation or excision. I was still in pain after the surgery, but I wasn’t allowed a follow up with the gynaecologist and my GP didn’t believe me as the letter said it was unlikely to go back. I then broke down crying to a different GP who agreed to refer me to a different gynaecologist. This new consultant said it was very unlikely to have grown back but did agree to give me another laparoscopy after me and my mum, (who I brought to the appointment expecting this would happen) insisted. More endo was found and removed, again I don’t know where from or how it was removed. I was still in pain a few months after this second surgery though. Again my GP refused to believe me, told me it was all in my head, and refused to refer me to an endometriosis specialist.

I spent years in bed, on strong painkillers including tramadol and oramorph. They make me so nauseous, even more nauseous than endo. They mess with my head and stop me thinking straight or being able to drive. They make me hot and sweaty and itchy. It’s no way to live. I’d go to the Emergency department at QA or Southampton, most doctors would accuse me of being dramatic and I wasn’t drying so needed to leave. Some doctors checked me for appendicitis and when that came back as fine, they’d discharge me. I don’t blame them, there wasn’t anything they could do, but I couldn’t cope with the pain.

When no-one believed I was still in pain after my second surgery and I was denied access to an actual endo specialist I went private. I earn minimum wage, going private was a difficult decision and I’ve had to make a lot of sacrifices to do it, but it felt like my only option. I was referred to Mr. Guyer at Spire Portsmouth Hospital by a lot of the girls on Endometriosis south coast. That decision was actually life changing. He believed me straight away, and said it sounded like adenomyosis, which would explain the pain after the removal of endo. He sent me for an MRI and put me on zoladex, (an injection that causes chemical menopause,) both of which appear to confirm his theory. The zoladex, despite the terrible side effects, is the only thing that has ever helped with the pain. I will be having a hysterectomy, which is the only known treatment, as soon as I am able. Unfortunately, due to covid this has been pushed back a few times and I had to go without Zoladex for a few months, which left me in horrendous pain again, but at least now I have a plan. I am 27 years old and I am looking forward to major surgery that will stop me from being able to ever have children, but if it helps with the pain and gives me the opportunity to actually live my life rather than staying in bed on painkillers then I can’t wait.

Ashleigh

Hi my name is Ashleigh, I’m 19 and I have

Endometriosis & Polycystic Ovaries.

My endometriosis journey first started properly when I was 14, although I’d had problems a few years prior. My first period was torture, but it was my first period, so I just thought that’s what it was going to be like.

I actually was told the day before I first started that if my pain got any worse that I should go to A&E as it could’ve been meningitis because I also had a severe headache, a strange rash type thing and some other symptoms, but then the day later I started bleeding and my mum congratulated me for becoming a woman!

Oh, what hell that was going to be.

​

I spent years in and out of the doctors and A&E. I had over 10 UTIs in a year, and was on and off antibiotics, which made me poorly in itself.

I was told it’s “all in my head”, that it’s just anxiety, that I’m making it up, that it’s just IBS… I had a paediatrician who didn’t believe me, referred me to a unit for people with “psychological” problems. Eventually I saw a private gastroenterologist, who agreed to refer me back to the NHS to see him for a endoscopy and colonoscopy – I was so happy because I thought “someone’s finally listening” – how naive was I?

The scopes came back fine, so again – it was all in my head. I’d had all these tests and they all came back fine so no one believed me. I eventually got so poorly that I was in and out of a&e and was losing a substantial amount of weight. My doctors put me on Cocodamol (30/500) and for the next two years, I was taking between 6-10 a day. The pain ended up getting worse after a while, and I ended up completely lost, and I attempted to take my life due to how low I was from the pain. A week later my mum paid to see a private gynaecologist in Bournemouth.

He listened. He wanted to help.

I ended up having a laparoscopy with him & when he woke me up he told me I had Endometriosis – I couldn’t believe it. It was the day before my 17th Birthday and it actually felt like the best present I could receive, to know that my pain isn’t psychological and there are things that could help me. I spent my 17th doped on morphine so that was interesting! After the laparoscopy I didn’t actually get any relief, I was then seen by the NHS gynaecology/endometriosis team at QA. I was put on Zoladex which is a temporary menopause drug. It was HELL. I ended up in and out of A&E again, but this time for severe migraines. I was having hot flushes – I basically turned into a menopausal woman at 17.

In August 2019 I was told I also had PCOS (Polycystic Ovarian Syndrome). In the September/October of 2019, I was again back in severe pain, I was put on morphine, and I remained on that for around 6 months. At that time I had another Laparoscopy which they had to remove yet more endometriosis (only 11 months after my last one!). I came off the morphine in May 2020 after reducing it slowly over about 6-8 weeks. I had ended up addicted to it, and it was so hard to stop. Since then I’ve not had any more surgeries as the last one (Jan 2020) that actually improved my quality of life! I’ve been off of opiates since May 2020 & am only on the progesterone only pill for my PCOS.

Endometriosis has ruined an awful lot of my teenage years. The years which are meant to be the best of my life; have actually been the worst. Whilst it’s been hell, it’s made me a stronger person, and it’s made me more empathetic. I’ve met some incredible people through this journey. Just because an illness is invisible doesn’t mean it doesn’t exist! Painful periods are not normal. Fainting because of pain is not normal. Being sick because of pain is not normal. Being bed-bound because of pain is not normal. If your period is impacting your life to the point you are unable to do your daily tasks, see a doctor. Beg for help. Don’t stop until you’ve been listened to. Nobody knows our bodies better than ourselves. My symptoms are pelvic pain, back pain, pain radiating down my thighs/legs, nausea, fatigue, longer periods, excessive bleeding, pain with bowel movements, and pain with sex. Honestly, the list goes on!

Speak to those around you, and get as much support as possible.

My mum’s been my biggest advocate throughout all this, if it wasn’t for her I wouldn’t have been diagnosed. I wouldn’t have got the help I so desperately needed. Thank you mum🤍x

Sending love to everybody & I’m always here if anyone needs me!x