Piper Nuelle

The image above might seem a little odd right for a post that is about women, endometriosis and the British NHS (National Health Service) but actually if you look closer the statues are basically what women are truly valued for, their bodies in a sexual manner, to be looked at and admired, to be put on a pedestal… But never to be taken seriously. There are naked women statues all around the main one with what seems to be a swollen belly, maybe an indication of a women expecting or with child, or her holding something very heavy… Which women are not normally considered for, being strong… Yet with a chronic illness and painful condition, women are very strong indeed!!!

Now, taking a step back away from the statues that were found in a garden centre I visited that had an Italian garden exhibition a few years ago, let’s focus in on women and how the NHS is drastically failing them… And my experience of this failure.

I am a women in my mid 30’s and a sufferer of Endometriosis! As a kid I started my periods young, aged 11, just two weeks before I started secondary school in the summer holidays. Since day dot they had been excruciating for me, I remember lying on my bedroom floor with my legs in the air and my back up against the cold wall trying to alleviate my pain. I tried heat pads, cold pads, painkillers, the works… I took multiple days off school in pain, I flooded my knickers and my trousers, I wore double pads, it was a teenagers nightmare and not to mention embarrassing. My mum at the time told me my pain looked like child birth pain and so she took me to the doctors and at the ripe old age of 14 and I was put on the contraceptive pill to try and contain my periods and my pain… It worked, for a while. Then I found over the years that my body would react badly to the different pills, Oestrogen especially mucked up my body, made me bleed for months on end with no breaks and would create havoc with my mental health.

At the age of 19 I met my husband and we decided very early on we wanted children. He’d had a bad car accident soon after we got together and it made us both realise that we wanted our own family. Yes we were young but in hindsight, it was a bloody good decision for us to have made because not only did it take me a long while to fall pregnant, but I have come to realise later in life that if I didn’t have my kids when I did, I most probably wouldn’t have had any at all!!!

So, I had my first… Then came the onslaught of pain, years of contraception and me being gas lit that it was all normal and in my head. I began bleeding and having my periods back almost straight away after giving birth and having the birth bleed. I bled, for months. I then went and tried different pills again, then the implant in my arm… That almost broke me… It made my mental health spiral due to the overload of chemicals and hormones, which like I said, my body doesn’t agree with. It then made me bleed for 9 months!!! I think I had one whole week where I didn’t bleed, the rest of the 9 months I bled. And seen as with women’s health and sanitary products, I had to pay so much at a time when I had a young baby to buy for, a home to pay for and I could only work part-time due to childcare. Back then as well there wasn’t so much help for period poverty, and I remember times of not being able to afford sanitary towels and nappies for my baby, so of course I went without and would have to do the ‘Oh so glamourous’ method of tissue around your panties. It’s such a shame that for such a natural thing that women cannot help happening, we have to pay for the luxury of containing it!

I had, had enough and wanted the implant out… My doctor… Refused!!! So I had to lie and say it was because we wanted to try for another baby for them to remove the implant from my body. It didn’t matter that it wasn’t working for me… All it did was show as a women how little control I had over my own body, especially regarding my health.

As a result of coming off the implant and the actually known fact of pregnancy stopping your periods for 8 months (Potentially) and that my baby was growing up and we wanted her to have a sibling, we decided to try for another. Luckily I fell again and my beautiful second baby was born… But my pregnancy this time was filled with problems… I bled throughout my pregnancy and had to have multiple extra scans to make sure she was ok. This time around I had severe pelvic pain, my womb had tilted and I couldn’t walk far most days and by around 7 months my husband had to ban me from driving… Weirdly with both my pregnancies I was massive! I was tiny in frame when I was younger, a size 8, but my bump was huge!!! So many people asked if I was expecting multiples. But no, just one each time but so much excess water and just large and swollen. Which meant I couldn’t fit behind my own steering wheel.

After my second pregnancy things got worse. I bled again constantly, I began getting severe pains in my womb, like someone putting their hand up my vagina with long nails and scraping the inner walls of my womb. Sex became painful during and after, to the point I collapsed from pain on the landing floor of our house. The pain would be so bad on my period that my fingers would essentially claw up, my arms and legs buckles and black spots would flicker in my eyes… This was apparently normal, just bad periods. Again they tried me on contraception and again I bled constantly, no reprieve, no rest, nothing. I got so depressed and down because I couldn’t exercise, because if I did the next day I would be doubled over with abdominal pain and bloated, unable to move or care for my children, so I comfort ate and put on ‘Some’ weight. Not an extortionate amount, I had been what a size 8 before kids, I was now a size 14 (The average normal size for a woman in the good old UK), but then people would comment on my weight, how big I got… Then I realised I was bloating, a lot more. Some days I would have a flat stomach… But then the next day it could be so bloated and painful I would look six months pregnant. I even used to have customers at my retail job ask me when I was due, tell me I was glowing… I even had a guy try to hit on me saying, ‘Wow, pregnancy is making you glow, are you married to the baby daddy or…’ He was stunned when I just hissed that no, I was now just fat! I wasn’t fat, the rest of me was fine, but my bloated stomach began to really make me feel low, it stuck out further than my boobs.

It was around this time that I then found out about Endometriosis.

Endometriosis is essentially where the lining or cells similar to the lining of your womb grow outside of your womb, causing scarring and pain. If you think about it this way, a woman’s body menstruates each month, having a period. In your womb those cells / the lining, builds up, but when no fertilised egg is attached it leaves the body, so it all leaves via the vaginal canal as a period. But, if those cells are not in the womb, they are somewhere else, they bleed but essentially have nowhere to go… So it all builds up, turns into scar tissue and chocolate cysts.

And Endo can pretty much spread to anywhere in the body;

• The Bladder
• The Bowel
• The Diaphram
• The Lungs
• The Spine
• The Lower back
• The Pelvic area
• And in rare cases, the brain and inner ear

But how did I find out what it was?

I had been invited to a friends birthday party, we were all sat around a dinner table having drinks. Me, on alcohol free. One of the girls asked why I wasn’t drinking, she had assumed I was a ‘Clean’ drinker, or so many years sober… So I explained that I was now on Co-codamol, and I couldn’t drink on them, but also if I did, my pain got worse. She asked me my symptoms, then she took my hand and told me all about her condition ‘Endometriosis’, and she thought I had it to because all my symptoms where the same as her symptoms. She told me to Google it, but… She also explained that when I decided to go to the doctors to tell them I had someone in the family such as a close aunt that had been diagnosed with it… Because if I didn’t, they wouldn’t take it seriously.

That night I spoke it over with my husband when I got home and we done some research, everything pointed to this condition, but no one had mentioned it before. So, I booked in with the doctor. I told them all my symptoms which at the time where;

• Migraines, some during the month but mostly hormonal and when due on or when on my period
• Pain during and after sex
• Bleeding during and after sex
• Constant bleeding and non stop periods
• Painful periods, but the pain had started to become all the time, not just when on my period
• Trouble peeing and needing to pee all the time
• Problems with my bowel movements
• Bleeding when passing stools, but… The bleeding came from my vaginal area not my bum
• Back pain, which over the years has got so bad it feels like my spine wants to fall out
• Shortness of breath
• Flooding, which is where you bleed so heavily it goes through your clothes
• Bloating which was hard and painful to touch
• Hair Loss. I had to take a lot of vitamins to keep my hair, I was loosing so much of it and being blonde made it look as if I was balding, so I had to dye my hair darker to make it look like I actually had hair
• Brain fog, my memory has got so bad, to the point I remember nothing unless it is written down and easy for me to see
• Pelvic pain especially in my lower tummy
• Shoulder pain
• Feeling sick and nauseous
• Chronic Fatigue, this actually got so bad later on for me, at one point I was only awake for around 3 hours a day!!!
• Night sweats and hot flushes
• Bleeding and swollen gums

At first my doctor just kind of sat there and said it might not be Endometriosis, that some women just get it worse than others. So I lied, and I told her one of my aunts had it, she was diagnosed around the same age with a Laparoscopy. With that they shrugged and said they would finally refer me to Gynaecology.

I was happy and yet sad. Happy I was to be referred, sad that I still wasn’t taken seriously with all my symptoms and had to lie like my friends, friend had told me to do.

So, whilst I waited to be seen by the Gynaecologist I was advised to try a few different things, one being to lose weight. Which with a hormonal and chronic pain illness is indeed very difficult. I was then also given the coil! Apparently, it is a ‘cure’ for Endo… Cure my ass!!! I had the coil fitted, which was one of the most painful experiences I have EVER had to do down there.

So, I had this bloody coil in for a few months. And you guessed it, I still bled, there was no change there. But, one day I took my youngest to a toddler group and whilst there I felt pain. I thought it was just my Endo pain playing up, so I excused us from the group and left early. I didn’t make it home… I drove and made it to a supermarket carpark where I had to pull over in an emergency, the pain was so immense that my hands clawed and I saw black spots and I then collapsed by my car. I phoned my husband who was at work for help. I didn’t bother with an Ambulance because the one time I did I was basically laughed at for going to A n E with a ‘Bad Period’. So, my husband rescued me and my daughter and rushed me to my GP. She examined me, said my womb was tilted and that the coil had slipped and was digging into me. Luckily she was able to take it out there and then. (I do later find out why my womb is tilted and turned).

I then had a waiting game of seeing the Gynae. About a year after referral I was seen. He was actually a lovely man and said right off the batt, I think you do have it but the only way to be sure was to have Key hole surgery to examine my innards, a Laparoscopy. I was soon booked in and underwent my surgery.

To my relief I had it. I had chocolate cysts (Endo) on my ovaries and around my womb. He also explained that it had also grown all around my bladder and my tubes for peeing. And that he couldn’t laser the Endo there because we would need a Urologist or Bladder surgeon to be present to make sure he didn’t snip something he shouldn’t. But he told me to see how I got on with this one and then to be rereferred if more surgeries may be needed in the future.

For around three months I felt great, normal periods, next to no pain, no fatigue… Life was great… Then it wasn’t again.

So, back I went to my GP to be rereferred. Almost two years later… I was seen!

This time my specialist planned for a Bladder surgeon to be present. 2020 was my first Laparoscopy. 2023 was my second… Years I had to wait for an ongoing condition.

The second Lap was only meant to take around 2-3 hours. I was down for 6! It had taken over my bladder area and needed so much lasered away. But this time, I had pretty much no reprieve, I still had the pain and my back pain was getting worse.

My lovely specialist was honest with me and told me that his skills were no longer what I needed and he referred me to the Endometriosis clinic in the hopes they could advise me and find a plan to work for me and my body. And well… What a Shit show they are. September 2023 I was referred and it was planned I would go onto the Zoladex injection to force my body into menopause to see if that could help my symptoms and maybe a hysterectomy would be a great route to take. I was told that the wait could be up to a year. By September 2024 I had heard nothing so decided to chase it up on the advise of my GP as I was due to stop my Zoladex. You are only meant to take it a year at a time due to the effects it can have on your bones, plus the fact that it is actually a drug that is there to treat some Cancers such as Breast Cancer. I was met on the phone with a rude receptionist who told me I wouldn’t see anyone before Christmas and to wait my turn. Panicking I contacted PALS to make a complaint.

The Zoladex really, really helped me. Before the Zoladex I had become like a zombie. I was merely awake around 3 hours a day, I had such bad Chronic Fatigue. I would wake up take my kids to school, go home and sleep, wake up at pick up time and pick them up from school, go home and sleep, then wake up at 7pm to make or eat dinner, then back to sleep I went. Then on the days I had to work, I would simply sleep all day, and then work my evening / night shift, and then sleep again for days waiting for my body to recover. The Zoladex had really helped and changed my life. I could function, be fairly ‘Normal’. I couldn’t come off the injection!!!

Luckily my GP contacted my old specialist who agreed to let me have the Zoladex a few months longer… But then… It did run out, around November 2024 they were worried about the effects it could have in the long run. By now I contacted PALS who contacted the Endometriosis clinic and they agreed to a consultation. By now though I was flagging again, the Chronic Fatigued reappearing and the brain fog took over. I became confused, because originally they told me I would be seen by the Brighton Endo clinic as that was my closest, but instead they booked me in miles away at another hospital which I couldn’t get to. So I had a telephone call. They promised me the Zoladex for another year and an MRI, with maybe a sight to a hysterectomy depending on the MRI results.

So, January of 2025 I had my MRI, baring in mind I had previously been on Zoladex for over a year and had been restarted on it again. And what I didn’t know until recently is that Zoladex shrinks Endometriosis, so it would NEVER show up on an MRI because it would have shrivelled up. It would still be there, hiding, almost laying dormant but an MRI would only pick it up if it measured so many Millimetres. So I had my MRI scan. Around the end of February I received a letter in the post stating there was nothing there and it was basically ‘NORMAL’. They mentioned they would be in touch soon for a follow up… A follow up that NEVER happened. I was meant to receive a telephone call on the 26th June… But it never materialised. I got so angry that I decided to go Private!!!

Above was the letter I received.

Fast foreword to last week. I decided to fork out and go Private to see an Endo Specialist. And wow what an eye opener!

She had agreed with me that with the Zoladex working the way it did with me meant that I was a perfect candidate for a hysterectomy. She couldn’t believe that I had been left on such high painkillers, Co-codamol, the highest one that can be prescribed since essentially 2018/2019 with no reviews and no discussion of how this could muck up my body. I now have other issues which is brain problems, I have constant whooshing and pulsating tinnitus in one ear, worse migraines and pressure in my head and now a Aneurysm, which luckily I have been told is not within a danger zone. And although they cannot say for sure, it could well be from over use of Painkillers and stress on my body from the Endometriosis.

She then went on to discuss my MRI results.

I said in a very sarcastic way, ‘Yeah I know my MRI showed nothing and it’s all in my head’.

She looked shocked and said, ‘No, your MRI shows that your right Ovary is twisted and stuck to the back of your womb and is twisting your womb to one side. You have Endo scarring down the Ovary tube but also to the ligaments that hold your womb in place from your back, which is essentially pulling my womb to one side and pulling on my back causing my immense back pain!’ The reason for my womb being turned, twisted and tilted!!! She also said there was a lot of scarring, which was causing my pain.

I sat there utterly gobsmacked!!! This woman just told me my body was right, something was wrong and it was telling me, it wasn’t all in my head, my Endo was messing with not only my ‘Endo’ symptoms, but my back pain was also not in my head, that is was causing this too due to scarring and pulling. She then went on to explain that the Endo Clinic should have known that my Endo would not necessarily show on a MRI scan right now due to the Zoladex shrinking it and making it less visible, and that they should have done me a face to face appointment to discuss this and my options. Not promised me a phone call and then to never call!!!

She also said a hysterectomy is not considered a true cure for Endometriosis because Endo spreads, that it could have spread to other parts of my body and the hysterectomy will only deal with my back pain, periods and hormonal problems and the Endo around that area, but that it would really help me in this case, and that I then could hopefully come off the Co-codamol and help my body recover and be under less medicated addiction and stress. And that once off the Zoladex, once I have had my hysterectomy that if any Endo adhesions flared up again in the future I could just have them lasered away again but at least this option could help most of my symptoms.

To say I was happy was a complete understatement. Yes it might not be a true cure, but it could help with my back pain, my inflamed body that is giving me the Chronic Fatigue, the hormone induced pain and bleeding from periods and other hormonal factors… This could help!!! But it was so nice to finally be listened to and understood. Not mocked and not made fun of by a health professional. The only thing is now… It is going to cost me… I now have to find over £10,000 to cover my surgery costs and the hospital care for the few days I have to stay there. This of course should have been considered and offered by the NHS… But again, it’s a laughable woman’s problem…

What amazes me in this modern day and age is how women and women’s health both mentally and physically are still being dismissed and ignored. The fact that so many women are being gas lit by doctors and told that it is all in their heads, that they just need to lose weight, or that it’s just a bad period all women get them, some are just worse than others, is so wrong!!! It needs to be taken seriously. So many women now are being diagnosed with Endometriosis or its sister, Adenomyosis, people that are celebrities in the lime light etc… Yet we are still being dismissed. The doctors can have proof in front of them, whether that be notes on paper, the patients records and images, or even when they are on the operation table… Yet they still dismiss it!

And another thing that really needs to change… To let women be in control of their own bodies!!! The fact I could not have the implant out, even though it mucked me up mentally and physically and I had to lie and say I wanted to try for another baby is sick. I actually asked for a Hysterectomy years ago too, after the birth of my second child when the shit really hit the fan with my body… But… I was told no!!! No your too young! You might want more kids! Even though you are too mentally and physically broken to have more kids! No it costs too much for the NHS! No you will have to take HRT for the rest of your life! No, it’s just a bad period get over it! No your a woman and you have no right to be in control of your own body!!!

Yet a man, a guy… Can be in control of his.

If a couple doesn’t want kids it is the woman who has to take pills, contraception and turn her body upside down. The hormones in these pills can make you gain weight (Which you are then told to lose), they can cause Acne, Depression, Migraines, and sometimes… Not even prevent the pregnancy. Yet the man… Doesn’t have to take anything to essentially muck up his body.

The NHS and doctors really need to be brough up to speed and to know how to diagnose and treat Endometriosis better. It is one of the most common problems now for a woman to have… Yet the treatment for it hasn’t changed really in over 40 years!!! They now need to help women. Make it equal, great healthcare for all, Men, Women, Adults, Children etc…

Plus, quite often for women with ‘Period pains’, we are then just handed out Painkillers like sweets, painkillers that back in the day were more than likely tested out on male bodies not women. Women’s bodies are different, our pain threshold and receptors are different and therefore all this can affect women different to men!

I really hope one day that women are taken more seriously. That their health will matter too. Maybe, just maybe this needs to be looked into properly and not just left. Not just excused as an episode of Hysteria like how doctors used to treat women. ‘Oh you are just hysterical with hysteria, it’s all in your head’.

Sorry it was a long one, I just needed to rant. Especially seen as I was ‘Gas Lit’ by the very Clinic that was meant to be specialists in Endometriosis! Telling me my MRI results were normal when in fact, they were not!

Take care all, and hope this helps someone out there, even if just one person to not give up and to know that you are NOT crazy!!!

xo Piper xo