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March is Endometriosis awareness month so I thought it was the perfect time to share my story, along with some products that help me. I'll warn you, this is an extra long post! Skip to the end if you just want to know about the products.
Endometriosis is a hugely misunderstood condition. The official description from Endometriosis UK is -
“Endometriosis (pronounced en-doh–mee–tree–oh–sis) is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
It is a chronic and often debilitating condition that can cause painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women (& those assigned as female at birth) in the UK are currently living with the condition. Endometriosis can affect all persons of a childbearing age, regardless of race or ethnicity. The impact can also be felt for life.”
Endometriosis affects roughly 1 in 10 people, yet it takes on average 7 years to get a diagnosis. Let that sink in - 7 years! Mine was actually closer to 9. Ridiculous, right?! It can only by officially diagnosed through a keyhole surgical procedure called a laparoscopy, where a camera is inserted in the abdomen (usually through the belly button). Endo rarely shows up on scans like MRI’s and Ultrasounds, which compounds the difficulty to diagnose.
My story starts when my periods started at age 14. I quickly developed issues with my period lasting longer and longer each time. I eventually went to my Drs when I was having 2 weeks of bleeding, 2 weeks off. I was put on a combined contraceptive pill which successfully regulated my periods. They were still about 6 days long and relatively heavy but were greatly improved.
I was fine for a number of years until I started suffering with migraines. This came to a head (pun intended) when I was about 21. I was having migraines almost daily so was referred to a Neurologist. He put me on a preventative medication (which luckily worked). He'd suggested coming off the combined pill as that can be a cause of migraines. So I came off the combined pill and went on the mini pill. This quickly started causing my issues. I was spotting (a very light period) almost all the time. Obviously this isn't ideal so I went back to the doctors. I was told that I had to give the pill time to settle in. After about 6 months, the Dr suggested that I try the Depo injection instead. I had a couple of those and it gave me the exact same issues.
By this point, this had been going on for over a year! I'd also started to get pain in my pelvis area. To me, it felt like a dull ache in my hip. I found putting a hot water bottle on my hip helped ease the pain. This got worse and worse so I went back to the Drs. They checked my mobility (which was fine) and eventually sent me for an ultrasound scan. About a week before my scan, the pain in my hip got so bad whilst I was at work that I had to get my husband to come and pick me up. He took me to A & E who didn't do anything as I was already booked in for a scan. I had the ultrasound which came back as normal. This gave me mixed feelings as it was a relief that they'd not found anything but then it was frustrating as we still didn't know what the issue was!
In the meantime, I'd been back to my Dr begging to go back on the combined pill as I was so fed up with issues from the Depo injection. He eventually agreed which I was really pleased about. I was soon back on the pill and the spotting had stopped. Coincidentally the pain in my hip went too! Win, win. I then had no issues for a few years. Turns out he should have never put me back on that pill as because I have migraines, I'm at a greater risk of having a stroke!
About 5 or 6 years later, the pain in my hip came back. I was also getting regular lower back pain too. I found that I often woke up in pain so thought my bed was to blame! A new mattress soon proved that wrong, as the pain continued. It soon increased and I was in pain most days.
Whilst this was going on, I'd also had this really odd pain in my stomach. It was a really specific, localised pain to the left of my belly button. It seemed to be a patch about the size of a penny and it was so sensitive! I literally just had to touch my skin in that area and it hurt. The strange thing was, the pain was intermittent! Some days it hurt like hell, other days I was fine. I'd not felt anything like it before, so back to the Drs I went. I was concerned that it could be a hernia. He examined my stomach and couldn't feel anything. He suggested that I'd probably pulled a muscle. This continued for a few months and it didn't improve. I went back to the Drs who then sent me for another ultrasound which again was negative.
I put up with the pain for about a year, then decided enough was enough! I again went back to the Dr, who again insisted that it was a pulled muscle. Luckily (so to speak) things then got worse. Literally a week or so after being fobbed off by the Dr, I woke up to blood round my belly button! I assumed I'd maybe scratched myself in my sleep but couldn't see a mark. The blood seemed to be coming from inside my belly button. So odd. Obviously I was really concerned, so back to the Drs I went! He checked me out, in case there was an infection (there wasn't) and said to just keep an eye on it. The strange thing was, the pain next to my belly button had eased!
A few weeks passed and the intermittent pain was back. Then my belly button bled again but this time it was right around the time of my period. By this point, I was frantically googling what on earth is could be! It was then that I came across Endometriosis. Things started to make sense - irregular, heavy periods, chronic pelvic and back pain. All of them are symptoms of Endo.
I then read about umbilical endo. Basically endo often grows on scar tissue, which is what your belly button is! Endo was growing behind my belly button and literally forcing it's way out! It's pretty rare apparently. Occasionally I can actually see what looks like a tiny blood blister deep in my belly button. How gross is that?! I read about how some women have had to have their belly button completely removed due to endo persistently growing there.
Anyway, I went back to my Dr, armed with all my research. Luckily I didn't need any of that, as as soon as I said that the bleeding was happening in time with my cycle, the Dr said "Oh it must be endometriosis!" He then went on to say that I should have noticed and said sooner. I was fuming! Like it was my fault. It hadn't been in time with my period originally, I'd have said if it was!
Anyway the Dr then referred me to a Gynaecologist and sent me for an MRI scan. The MRI scan showed that I had a smallish fibroid which the Gynaecologist said was nothing to worry about. She said that it was highly likely that I had Endo but didn't want to send me for a diagnostic laparoscopy because they'd have to go through my belly button and she didn't want to aggravate that area. She suggested taking my pill back to back for 4 months, then having the 7 day break, then back to back again to reduce the amount of periods I have. When I asked her if my hip / back pain could be due to the endo too - I was told point blank no. She even put it on my notes that it couldn't be endo and that if my issues persist, I'd have to see an orthopedic specialist. I had no idea at the time what issues this would cause me!
Obviously my hip / back pain persisted so I went back to my Dr. I tried to suggest that it could be my endo (as it's one of the main symptoms!) but as the Gynaecologist had said otherwise the Dr ignored me. I was then referred to an orthopedic specialist and had an MRI scan, only to be told that there was nothing wrong with my bones. Surprise, surprise!
I then went back to a different Dr who actually listened to me and agreed to referred me back to a Gynae. I said I didn't want to see the previous woman as I had no confidence in her. I'd done a lot of research about Endo and had found that there are BSGE hospitals that specialise in laparoscopic surgery. There happened to be one in Hull (Castle Hill) which is only about 40 mins away from me, so I asked to be referred there. When I got the referral through, it was for Hull Royal Infirmary but I figured that Drs often work across a couple of hospitals so didn't think anything of it.
Anyway I eventually saw the Gynae at Hull who said that I'd need a diagnostic laparoscopy and put me on the waiting list. By this point, I was in pain every day and was taking a cocktail of painkillers to get me through the day. I was taking paracetamol, ibuprofen and tramadol and was still in pain! I was having regular time off work and even had to drop down to reduced hours. Luckily my work were really understanding and supportive. I finally got my surgery date through as of course it clashed with our wedding! I ended up having to rearrange it for after the honeymoon.
Finally my surgery day came. It was the first time I'd had anaesthetic so I was pretty nervous. The surgeon was lovely though, she really put me at ease. She suggested that I have a Mirina coil fitted during the surgery as it can be effective to help endo. I'd done my research about this previously and had heard really mixed reviews. For some it was amazing, for others it was absolute hell. I really didn't want it but felt pressured to have it fitted. The procedure confirmed that I had endo on both of my ovaries, behind my bladder and behind my uterus. Surprisingly they didn't find any near my belly button. The surgeon had performed ablation, which means they use a laser to burn away the endo.
I recovered from the surgery quickly and was back at work (on reduced hours) after a week or so. I felt that my endo pain was reduced but the surgery discomfort replaced it! I began to reduce my daily painkillers and after a month or two had managed to half the amount I was taking. And that's as good as it got! My pain level started to increase again and I was soon back on the full whack of meds. To say I was gutted would be an understatement. I felt like I'd gone through all that for nothing!
So back to the Drs I went, only to be told that it was probably the coil causing me issues and that I had to give it 6 months to settle. I begged to the Dr to send me back to the gyne as the pain was exactly the same as before so couldn't be from the coil. They refused. After about 4 / 5 months I went back to a different Dr who agreed to refer me back to the gynae (after lots of tears from me). This time I specially requested to be sent to the BSGE hospital at Castle Hill.
In the mean time, I'd been doing loads of research about endo and had discovered that there are two types of surgery - ablation and excision. I'd had ablation which is with a laser. The best analogy to describe ablation is it's like cutting the head off a weed and leaving the root behind. 9 times out of 10 it's going to grow back.
Excision on the other hand is where they cut out the endo, effectively removing the roots, so to speak. This has a much higher success rate but it more intrusive. However, the main issue is that excision is extremely difficult and there are hardly any surgeons that can effectively perform it. A spot of endo can be the size of a grain of sand on the surface but much bigger underneath. A bit like an iceberg!
I went to my next appointment with a the new gyne at Castle Hill and was told that I'd need surgery again. He suggested putting me on a drug called Zoladex, whilst I waited for surgery. When I asked if it was going to be ablation or excision, I was told ablation. I was so deflated. In hindsight, I should have found a different surgeon then but I was so desperate to be pain free, I just agreed. The gynae didn't really explain Zoladex to me, other than it was a monthly injection that would put me into temporary menopause. The surgeon stated that it would fizzle out my endo (yeah right!)
So I started having the Zoladex injections. They were administered by a nurse at my local Drs. It's not actually a standard injection, it's a tiny implant that is injected into your stomach. It's got to go in fairly deep. It slowly releases the drug, putting you into temporary menopause. Every time I went to get my injection, the nurse would say about how it's one of the biggest needles they use and ooh you're so brave it looks painful! It wasn't pleasant but it was over quickly. I would end up with a big bruise though! They have to alternate sides each month too.
By this point, I'd ended up so down with being in pain all the time. I got prescribed antidepressants which actually helped so much! I'm still on them now. Unfortunately the Zoladex injections made no difference whatsoever to my pain. I had a load of bad side effects too including weight gain and aching joints. I literally couldn't grip anything properly as my hands hurt so much! My feet were particularly painful too. I ended up taking HRT (Tibolone) to counteract the side effects. Originally I should have only been on Zoladex for a couple of months but unfortunately the surgery waiting list was huge so I ended up being on it for well over a year. I've since read that I should have been having regular bone density scans because it can cause issues there. It took months after coming off Zoladex for the side effects to eventually go.
Whilst waiting for the surgery I'd got to a point that I was in so much pain that I was having at least a day off work a week! It was ridiculous, I just wasn't coping. I ended up complaining to PALS (patient liaison) because I'd been waiting so long. They got my case reassessed as urgent and I finally got a surgery date!
My second surgery was pretty much the same as my first recovery wise. This time I didn't have a follow up appointment with the surgeon which I was really annoyed about as he was meant to come and see me after the surgery and hadn't. So I had no idea what he'd actually done or found. I wanted to know if it had spread or got worse. I literally had one sentence on my discharge papers which said endo ablated and adhesions removed. Adhesions are basically like spider webs that form after surgery. People with endo are particularly susceptible to them. They can literally glue your organs together and pull them out of place! You'll often hear of an ovary being stuck to the wall of an abdomen because of adhesions. I think I've had an adhesion tear a couple of times when I've rolled over in bed. Twice I've woken up in the most horrendous pain. It was that bad that I thought I was going to be sick so tried to go to the bathroom. I ended up having to crawl to the bathroom, then passed out as the pain was that bad. Awful.
Unfortunately the second surgery was the same as the first - useless! Within a month or two, I was right back to square one. By this point, I'd been in daily pain for years. I can't describe how draining that is! I realised that I would have to find a surgeon that could perform excision. I'd come across a group on Facebook called Nancy's Nook - they're an education only group (not support) and have a worldwide list of confirmed excision surgeons. The closest one to me was in Manchester, which is a few hours drive away. I went back to my Drs and asked to be referred to this particular surgeon and explained why. My Dr said that he'd have to discuss it with a local gynae first before referring me. I heard nothing for a month or two so chased it up. Apparently they were waiting to hear back from the gynae! It was obvious that they weren't going to refer me.
I eventually got fed up of waiting so decided to pay for a private appointment with the surgeon (£250). There was no way I could afford private surgery but I'd heard of others paying for a private appointment to get seen, then having the surgeon refer the patient back through the NHS for the surgery with them. I got an appointment within weeks!
The appointment with the surgeon (Dr Edi-Osagie at St Marys Manchester) went brilliantly. I felt he really listened and understood my issues. He examined me and said straight away that he could feel endo nodules next to my belly button and behind my uterus. He suggested excision surgery and said he would sent a letter to my Dr asking him to refer me back to him for the surgery. He also suggested that I may have nerve damage due to the endo, so to try taking Pregablin. This didn't help but my Dr then put me on Gabapentin which is a similar, stronger drug. This helps a bit and has replaced my Tramadol.
I then got a letter saying I had a NHS appointment with the surgeon for April 2020. This then got cancelled due to COVID. I ended up having a telephone appointment around June / July time and because I'd been seen by the surgeon previously, they were able to add me straight on to the surgery waiting list. I was told it would be about a years wait. Obviously not ideal but it is what it is! I'm pretty sure it'll be even longer now as I don't think there's been any non-urgent surgery performed during lockdown. So now it's just waiting! Hopefully this time, it'll actually help!
Update as of March 2022 - I thought I'd better update this blog seeing as though I've now had my surgery! So as of March 2021, I was on the waiting list for surgery with Dr Edi-Osagie. Because of COVID the already long waiting list was even longer! My daily pain levels were starting to increase and I had started to get IBS type symptoms. These were getting worse by the day - I'd get awful pain / cramps in a specific spot in my stomach after eating and would end up stuck on the toilet for ages (sorry TMI!). The pain would nearly make me physically sick, it was that bad. Luckily I was working from home a lot at this point but it was really starting to cause me issues!
In Oct 2021, I got a phone call from the hospital out of the blue. They'd had a cancelation and could operate on me the following week! Obviously I said yes as I'd been waiting for so long. It was a bit of a nightmare getting everything arranged so quickly. I live in Grimsby, so it's a 3 1/2 hour journey to Manchester, so even just going for my pre-op wasn't easy! I went on my own on the Monday for my pre-op appointment which included a COVID test. I wouldn't know the results until the day of the op as everything was so last minute! Luckily everything was ok. My husband and I travelled to Manchester on the Tuesday to stay overnight in a hotel, as I had to be at the hospital for 07:00 hours on the Wednesday. Luckily there's a hotel within walking distance of the hospital. We had the room booked for two nights as I'd been told I'd be kept in overnight so would be allowed home on Thursday. My husband would stay in the hotel so he could come get me as soon as I was discharged.
On the day of the op, I got "checked in" to the ward and was pleased to find that I had my own room! I has seen by a surgeon and an anaesthetist who went through everything with me and said I should expect to be taken down to surgery for about 12:00 hours. I had to do the usual nil by mouth. I'd been allowed water up until 06:00 hours when I'd taken my last lot of pain killers. So I sat and waited. Someone came in and said they were running a bit late so I could have a bit of water until 12:00 hours. By 15:00 hours, I was still waiting! I was starving, so thirsty and in pain as couldn't take any pain relief. Then a different surgeon came in and said that unfortunately they'd ran out of time and my op was cancelled. I just burst into tears! The surgeon, Dr Theo Manias, was so lovely. He apologised and said they were short staffed but said that he could do the operation the following day for me. This left me in a bit of a predicament, as I'd purposely travelled to Manchester to have excision surgery with Dr Edi-Osagie. Dr Manias assured me that he also performed excision and that it definitely wouldn't be ablation. He really put me at ease, so I agreed. I then panicked as my husband was due back at work on the Friday. He's self-employed so no work = no money and he'd already had to cancel 3 days of work last minute, so we really didn't want him to be cancelling Friday too. Dr Manias said that it wasn't an issue at all, I could stay in hospital until Saturday, when my husband could collect me. Problem solved! I had to stay in hospital that night so I was ready for surgery first thing in the morning. I was finally able to eat, drink and have some pain relief!
The following morning (Thurs), it was the same drill. No food or water. Dr Manias came round to examine me and go over everything one last time. He explained that he would have to make an extra incision in my stomach to the left of my belly button to get to the umbilical endo cyst. He assured me he keep it as neat as possible! I told him to do whatever he needed to, I wasn't bothered about scars.
I was taken down for surgery at about 10:00 hours and was awake back in recovery by 13:30 hours. I soon came round and wanted some food! I felt pretty good but was confined to my bed, as they'd put a catheter in me. I'd not had this with my previous surgeries and really didn't like it! I wanted to be up and taking myself to the toilet but was told under no uncertain terms that I had to stay put for 24 hours at least. I also had these things round my legs that intermittently inflate and deflate, to help stop blood clots. It was basically like having a blood pressure cuff on each leg! It took some getting used to, especially when trying to sleep.
The nurses were really brilliant and looked after me so well. I was given oral morphine as and when I needed it, so was never too uncomfortable. On the Friday, I was moved out of my room on to a ward with two other ladies who were then both discharged, so I had the ward to myself that night. Quite lucky really! Dr Manias came to see me and explained that he had excised all my endo from around my ovaries and uterus and removed the endo cyst from behind my belly button. He noticed that I had scaring on my uterus from my previous operations. I asked him what stage my endo is classed as, as no one had every classified it before. He said Stage 2. borderline 3. Endo is classified under 4 stages but the stages don't equate to symptom severity. You could have stage 1 and be in loads of pain, or stage 4 with no pain! It all depends on where it's growing.
On Saturday I was discharged with blood thinning injections, that I had to do myself (after being shown how to do it by a nurse). My recovery was fairly straight forward. I had three weeks off work in total but that was including my pre-op and days before the op, so it was only really 18 days after the op. Luckily I was working from home at the time so that made going back easier. Once my surgery pain started to subside, I started to slowly reduce my painkillers. At this point I was taking over 30 prescribed tablets a day just to get by! I'd been taking painkillers (including Tramadol and Gabapentin) every single day for over 6 years so I was a bit worried that I'd have withdrawal issues. I made sure to reduce my intake slowly and luckily didn't have an problems. As the weeks passed, I noticed that my pain levels were definitely reducing. The IBS / stomach issues had completely stopped which was a huge relief. I was so paranoid though, every time I had a day where I had some pain, I automatically thought the worst and thought the op hadn't worked (again). I was really up and down with it! When I'd previously been sent on a Pain Management course by my Dr, they'd explained that when a person has chronic daily pain, there brain changes over time. Being in pain becomes the norm, so even when the pain stops, the brain can still think it's in pain. This takes time to get back to normal. So I kept reminding myself to not be impatient and to give it time.
By the time I had my 3 month post-op appointment (which Dr Manias kindly did via phone so I didn't have to travel), I was completely pain and pain-killer free! It still feels strange to say that. After over 6 years of needing painkillers every single day, just to function, it's wonderful! I actually feel like I've got my life back, it's made such a difference. I've even come off my anti-depressants.
Now unfortunately there's no cure for Endo, so it will grow back at some point. I'm on the mini pill, that stops my periods, so that can help slow it down. Dr Manias advised me that after excision, patients usually get 4-5 years before needing surgery again. Even if I get less than that, I'm happy! To be pain free again after all that time, is amazing and I'll make the most of it for as long as it lasts. As soon as I get issues again, I'll go back to Dr Manias for more surgery.
Update 2023 - So it’s been over a year since my surgery and I’m pleased to say I’m still doing well! I actually feel like I’ve got my life back. I had a good year with no issues at all. I’ve had a couple of hiccups recently, thanks to the mini pill. I was on one mini pill and started having issues with spotting, that kept getting worse. The Dr changed me to another mini pill and that was even worse! I was having full blown bleeding and spotting too. So I came off the pill altogether to see how I got on. I’ve been on some form of hormonal birth control (for my endo) since being 14, so was intrigued to see what my natural cycle was like. I had a couple of months off the pill and unfortunately they weren’t great. I had a bad endo flare up with pain and bloating around ovulation time, which makes sense as you get a surge of oestrogen at that time and that’s what fuels endo! I even had minor bleeding from my belly button again, which was a proper kick in the teeth. My actual periods weren’t great either, they really wiped me out. I suffered with terrible fatigue and queasiness. The last one was the worst, I had 5 days of issues before I even started bleeding! So I went back to the Drs. I’m now back on the original mini pill but taking 2 pills a day, to see if that helps. I’ve had some bleeding around my usual cycle time but didn’t feel ill with it, so it’s an improvement so far! Hopefully I won’t get any spotting again. We’ll see! I’ve got to give it 3 months to see anyway. Never simple is it?!
Well done if you've made it this far! I toyed with condensing my story but I think telling it in full really shows the issues that people with endo face. It can feel never ending! I also wanted to highlight how difficult it can be getting a Dr to listen to you. I'd previously started to think it was all in my head. You really start to doubt yourself when your Dr constantly fobs you off. Obviously not all Drs are like that - there's been some that have been brilliant with me!
Update March 2024 - Unfortunately my Endometriosis symptoms have recently started to return. I’ve been back to my Dr and requested a referral to St Mary’s Manchester again. I’ve been told my appointment won’t be until May-July time.
Thanks for reading - it's been a long one! If you think that you might have Endo too, please go and see your GP and be persistent if they keep trying to fob you off! Endo is so much more than a bad period and the sooner it's diagnosed, the better.
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