my endometriosis story | symptoms, getting diagnosed, surgery and everything inbetween

oh right you want to get comfy for this one it's gonna be a long one hello and welcome back to my channel thanks so much for clicking on this video it means so much if you are interested in endometriosis or hearing my story that is exactly what this video is going to be I'm just going to be telling you my story and my experience with endometriosis I feel like it's important for me to say I am not a medical professional I am no one but a girl that has been diagnosed with endometriosis a few years ago and I just want to share my experience to help raise awareness for this awful awful condition I can't work out if I need to zoom you in a bit should I bring you in a bit let's get close and personal oh is that a bit weird so my symptoms started when I was 13 which is when I started my period I can really distinctly remember my mum was sitting on the side of my bed and me just rocking back and forth in absolute agony because my periods were just so painful from the get-go and let me just say this before I go into anything else if your periods are unbearably painful that is not normal no matter what you've been told if a doctor's just you know dismissed you and be like oh you're fine just take a paracetamol if you can't manage on a paracetamol alone that's not normal if your periods are stopping you from going to work doing daily activities living your life as normal that is not normal and I wanted to stress that at the very start of this video because I feel like a lot of us are invalidated for our pain or we're told you know here's some painkillers or here's some contraception which I'm going to go into that it's not necessarily always a bad thing but you shouldn't just be given those things and the pain not be investigated you know so yeah I'm 13 having awful periods and it's when I get to like 15-ish I'm like okay I want to go on the pill so I was with Andre when I was 15. we weren't having sex then I knew I was approaching 16 when those kind of things might start happening sorry to my family if you're watching this but you know it's all educational I thought the pill might also help my periods because my periods were really heavy and as I said really painful I also struggled a lot with like UTIs and UTI symptoms which I now and I can be because of endo being on your bladder it makes you feel like you've got a UTI when you don't necessarily do I mean I did have UTIs I tested positive for them but sometimes I was going to the doctors feeling like I've got an awful UTI and then test me for it and I wouldn't have it which I now know is a symptom of endometrium Joseph I feel like I'm waffling on so much already but anyway I'm 15 I go on the microgynon peel that's a whole other story for a whole different kind of day but it did actually help the pain of my periods they did the pain did reduce a lot when I was on microgynon like I can't deny that I have so much to say about micro going on if you haven't seen the pill documentary by Davina McCall it's kind of all spoken about on there I'm actually in there um but yeah if you haven't seen that go and watch that because it talks about the pill a lot so then I get to UNI I'm still on microgynon and it's first yeah and quite a lot of us are on micro glide on like the girls that I met and all of us have these these same symptoms where our mood swings are insane our mental health probably wasn't the best and generally we just weren't feeling great on the pill we didn't really know who we were a lot of us got put on it like four or five years before that and obviously you go through a lot of changes in those years so I decided to change my pill during this time my mental health is up and down like a roller coaster Andre and I were in a long distance relationship which is difficult I didn't really enjoy the whole uni experience massively I mean there were parts of it that I loved and some of the bits I really didn't enjoy after trying around three or four pills I think in second year I was like I don't know who I am I feel really depressed I'm coming off the pill completely this is when things started to really kick in for my endometriosis still at this point I had no idea that I had it but I can really distinctly remember being sat on the toilet in my house in second year and it was in like a little alcove kind of like the walls were really close and then the bath was the other side of that wall and I just remember grip it like Charlie grip onto each side of the wall and being like Oh my God this this can't be normal I was shaking I was like if you've experienced awful period cramps and pain you know how bad it is it is excruciating and I was literally in shock I was like this was like one of my first few periods after coming off the pill and I was like this cannot be real like this this cannot be happening like it was awful so the summer between second and third year of uni I was working at dog kennels and there was a couple of times where I'd come on my period gone to work and then like been in excruciating pain and I was just like I don't understand what's happening to me like I've always been able to cope with my my periods when I was on the pill I literally just didn't understand so after being sent home from work like two or three times I was like okay this is ridiculous I need to go to the doctor at that point I'd heard of endometriosis because one of my friends Lucy who I went to school with actually had it so and I was definitely on my radar but as a lot of you will know there isn't a lot of talk well definitely back then we're talking five or six years ago there wasn't a lot of talk about it so like I kind of thought I might have it but that felt like the worst case scenario like a really awful condition like I couldn't believe that I could possibly have that kind of thing because I had no idea how common it was when I went to the GP it wasn't the best experience um I did bring up endometriosis and he said it's very unlikely even my age I mean I was like 1920 at this point so very very possible to have endometriosis um but he suggested that I try some painkillers which were oh what are they called now methylamic I said I'm going to write the name of it somewhere because I cannot for the life of me remember what it's called but it's something along those lines like acid so I had those um and I was told to take them as soon as I start to feel my period pain come on um or the first day I'm expecting my period I take them three times a day until my period stopped I tried that and to be honest they did help the pain but the side effects I found really rough especially when I've been taking them more regularly I was finding myself getting really quite nauseous but I just kind of powered through because I kind of figured that was all my option was I didn't want to go back on the pill because it made my mental health worse and the doctors have given me these painkillers which I thought you know that's it that's all I can do so we'll just go with that I've been filming for so long and I feel like I'm only just like getting to my story so this is this is going to be a really long video I'm so sorry so now we're gonna like Fast Forward really quickly a few years because I didn't seek any more help after this I was struggling every single month with my period it was unbearable so I did third year of uni and it was so so so painful every single month that absolutely dread my period I wasn't going to to UNI a lot anyway because I didn't have many contact hours which helped but I just spent so much time in bed and my periods were just awful like I literally just used to dread them every single month once I finish uni I moved back home for a few months worked my job at the kennels and then I moved to London a few months after that I got a job in London and again every single month I was having to go to the toilet to be sick I was going to the toilet to take extra strong painkillers because I was embarrassed I was having to take them on my desk leaving work because my pain was so bad like it was awful and every month I text Andre my mum and Danielle and all three were three of them would be like look you need to do something about this like this is getting silly like every single month and then once my period had finished and my pain had kind of subsided a bit I was like oh it's fine I'm not gonna go to the doctors like they're not gonna be able to help me or I was so petrified of having the diagnosis of endometriosis and the idea of not being able to have children or having to have surgery absolutely petrified me to the point where I was like it's better to have this pain than to try and seek help this has just taken me so long to figure out because I could not work out when I moved into different places so moved to London in 2019 and then moved into the house with Andre and three friends in 2020. having moved to London I changed my GP from the one I'd seen initially when I was like 19 ish that put me on the methanemic acid is that what it is I can't remember they put me on that I changed her GP in London and I'd already gone to them for my mental health because I was on antidepressants by this point and I know they were quite a helpful GP so I was like right I'm gonna try this again I need help from my periods like I can't do this anymore I can't remember the exact timings of it but anyway I I have a telephone appointment with a doctor and I'm like help me my periods definitely aren't normal the pain is excruciating it's affected by mental health I don't know what to do I count my blessings every single day that this GP was absolutely incredible and validated me in a way that I'd never ever felt before about anything she said it absolutely doesn't sound normal I'm so sorry you've been going through this which is literally just like the nicest thing to hear like someone to just get it if she said having tried contraceptions to help with the pain and I was like I have tried the pill in previous years and it's not something I really want to try again he was like what about a marina coil because if it is endometriosis that you have the koi always often a really helpful treatment so how would you feel about trying it and I was like at this point put anything in me to stop the pain like I will try anything so I had to wait quite a while to be able to get the coil because it was so busy and it was still covered time so it was hard to get an appointment but in March 2021 is when I got my Marina coil fitted and I was also on a wait list for a ultrasound I think I ended up having a cancellation ultrasound like three days after I got my coil this was an internal ultrasound so they use the probe and go into your vagina to like examine your ovaries your uterus everything like that to see if there's any indications of endo when I had that done the nurse that was actually doing it like told me that my ovaries were really stiff which can indicate that like they're supposed to be able to rotate or something I don't know the ins and outs bit but she basically said to me that they are completely stuck which can indicate that there's either cysts adhesions and dough anything like that can be like stuck around them which are preventing them from moving this honestly gave me quite a bit of relief because I know how rare it is for Endo or CIS or anything to be found on an ultrasound just because you have a clear ultrasound doesn't mean that you don't have Endo like they don't necessarily go hand in hand it's so hard to get the Imaging if you have kind of surface Ender or even deeply infiltrated depending on where it is it's not always going to show up on a scan but anyway she sent the Imaging off to um sent guys and Thomas's Hospital which is where I was having my care and they advised me there to wait between three and six months to see if the marina coil help me because they want to use surgery as a last resort although it is something that is a diagnostic tool as in you're not going to know that you definitely have Endo until you have that surgery they really tried to put off doing surgery for so many reasons but as well it is a massive toll on your body like I've had one surgery and I'm really putting off having the second one because it is such a huge thing for your body to go through so that all happened in like March 2021 then we get to like June so April May June yeah it was about three or maybe July that I had a follow-up appointment honestly this time is such a blur to me because I was struggling with my mental health so bad the pain was excruciating I was in bed like two weeks of the month like it was just horrible and not knowing what was what I just it was just so bad like I didn't really have much of a life I never left the house I was so like I just felt horrible like it was the pain was getting more and more and at that point the coil wasn't helping I was still having my period super regularly and that was when I had another internal examination I think that was with the surgeon actually I can't really remember as I say this time is such a blur and I can't remember if he didn't know the ultrasound on me or he just did like an internal examination but he confirmed the same kind of things that my ovaries looked quite quite compromised and he was a bit concerned about them so it was at that appointment that he was like okay we're gonna value for a laparoscopy I was buzzing because I felt like that was my only option at that point I as I say I was really quite depressed and it was it was just horrible like it was just not a nice time at all like I really looked back on that time with a lot of sadness because as a lot of you will know if you're watching this if you struggle with Endo like it can completely take over your life and it had at that point like it was just it was just awful and as well I didn't know that I had endometriosis like it had been brought up and you know I had all of the symptoms but until you have that surgery you don't know what's going on and that's a really scary thing when you've got stuff going on inside your body and you don't know what it is that's that's really terrifying so I get put on the waitlist for surgery I'm not told how long the waitlist is I think they said around eight months to 12 months but what I did was rang the reception and said I was available for cancellation appointments like I did I wasn't working at this point I was just doing like Tick Tock and stuff so I had that freedom to be able to say literally fit me in whatever it got to the point around the two and a half three month point of being on the weight there so I was in Daily pain like screaming at the top of my lungs crying like doubled over like I would be stood up fine and then I'd be collapse on the floor like it was so so so bad it was then when I was ringing up like pretty much every week to say please get me in like I feel so bad for these receptionists because it's not their fault I was literally crying down the phone like I I don't know how I'm gonna do this mentally like it is it's making me really not in a good place I don't really know how to say the words out loud but I was really really struggling at that point then finally one of the times that I rang she put me on hold for about 20 minutes and then then when she came back on the phone she was like we've got a slot in six days and we've had a cancellation can you do it I was like oh my God yes like oh my God like exactly happening and I was at my mum's when I got that call and I just cried my eyes out because I was like actually having surgery like this is real it's happening I'm gonna find out whatever the hell is going on because the thing is I just thought at that point even if it's not endometriosis and it's something worse or different I'm gonna know and that is that is all I need at this point because what the hell is going on inside me in October 21 I had my very first laparoscopy and it was confirmed that I have stage three endometriosis so laparoscopy is Keyhole surgery where they do incisions they put a camera in and then they go in and they can either burn away the Endo which is called ablation or they can rip it out of the root that sounds disgusting but that's called excision surgery and that is considered like the best gold standard of endometriosis surgery they found Endo really widely spread across my pelvis which you know was really hard to hear but at the same time I kind of knew it was going to be like that anyway like that's exactly how it felt to me some of my Endo was superficial which means it's just kind of on the surface but some of it was really deeply infiltrated actually something that I wanted to say is the stage of endo that you're diagnosed with doesn't correlate to any pain some people can have stage four endo and not know they have it and some people have stage one endo and it's completely unbearable it literally depends on so many different factors as to whether you feel pain or not whether it affects you so you know if you have surgery in your diagnosis stage one that doesn't mean that your pain is any less than someone that's got stage four so just don't worry about that from what I understand of at this stage literally just reflects How Deeply infiltrated it is it's nothing to do with the Pain Scale my surgery was in the afternoon I got there at about 10 a.m I think and I had to wait until about three four pm for my surgery it ended up being quite long I think I was in theater for about three hours again this is really a blur and obviously I'm not going to remember it that well because I was put under but yeah I think was about three hours I ended up having to stay overnight I don't know if that was because of the timings of it and I'd had surgery like basically in the evening or if it was because of complication it wasn't I didn't have complications but they had to keep my catheter in because of the end I removed from my bladder um and stuff like that so yeah I ended up having to stay overnight I really would recommend if you're going for a laparoscopy to pack an overnight bag just in case I was so grateful to have things like my dressing gown Lucas Aid sports like just home Comforts that just made it feel a little bit better because obviously you're in hospital on your own and it's a bit sad the next day in the morning I had to do like two ways I think but on my own like with the cafetera moved before I was able to go home so I ended up going home about 4 P.M I think I think I'm gonna do a whole separate video on preparing for surgery what I'd recommend the recovery and stuff because it's just so much to say about a laparoscopy like I wouldn't be able to do it justice in this video but yeah I had the surgery it was confirmed a head Endo they showed me images of it and it was everywhere and it's really disgusting it's like little black like dots like like they'll just be like a little crevice like I had loads on my pouch of Douglas I have no idea what that is or where it even is in my body but by Patrick Douglas was literally like covered in Endo and they were showing me a picture of like that's disgusting like it's so gross so I guess the next thing is to kind of tell you where I'm at now because that was my surgery in 2021 and we are here so currently I still have the marina coil and you know what I actually love the marina coil it nearly stopped my period but it didn't completely stop them so I wasn't having a bleed as such I'd have like a really really faint fade bleed like barely anything but because I was still having that it meant that I was still ovulating so I was still getting ovulation pain and I was still getting period pain and no pain but I was contraceptive and as everything else I think the marina coil is the best contraceptive out there or people are frightened for getting it put in or getting it taken out you know it's not the best experience is not like super comfortable I mean you've got someone in an intimate area of your body so it's not the best but for the 10 minutes of that appointment versus the five year kind of cover it gives you and the way it can limit your period some people have no periods on them as well so it can be amazing I love it since surgery my symptoms have been slowly getting worse and worse um which is common sadly if you didn't know there is no cure for endometriosis because it can just grow back so basically what we have to do is just find a way to manage and reduce our symptoms in a way that makes everyday life livable so earlier this year I think I've been on it about five months and my my Endo specialist called Claudia she's at St Thomas's no she's not saying guys she is incredible like I don't know how I would still be continuing to fight my battle with Endo without her she is genuinely incredible not we should ever watch this but Claudia I bloody love you so she recommended to stop this kind of Psych cyclable pain cycle this pain that's happening in Cycles because I'm still having a period and ovulating I needed to go on the combined pill I was extremely extremely apprehensive to do this actually last year I tried the mini pill with Sarah's there and within eight weeks I felt like a big cloud of depression was just coming back over my head so that was a no-go and that was only last year so when she was like we need to try the pill I was like um okay but my other options I've been back oh I've missed out so much because last year in October I had nerve block injections I've actually already got two videos on my Channel about that sounded so weird two videos on my channel I've got two videos on there already about the nerve block injection so I guess I'm not really going to go into that but basically they only helped for about six weeks and then the pain came back so yeah I had the nerve block injections tried the sarazep pill wasn't working for me I'm on the combined pill haven't had any side effects other than my boobs my boobs are growing uh rate that I cannot keep up with I mean you can't see right now because they're loving them the camera but they are rubbing a rapid rapid speed but mentally I've had no side effects from this pill which I'm really grateful for it's called a loin I'll put it on screen it's e-l-o-i-n-e so it really has helped in terms of I'm not having regular psych cyclable why is that word like I'm not having pain in Cycles which is exactly what we wanted to eliminate so day to day it has really helped with my pain I mean I am still getting pain and I'm almost finding it more difficult because it's completely random before when I was having periods or it was in a cycle I was tracking it so I could say on X day I was having this pain and then I knew two weeks after that I'd most likely get another pain whether that was supposed to be my period or my ovulation and it was so much easier to track whereas now I just get pain on random days and we'll just get random triggers and it's just like but my I have to be fair like I have had a few times where I've been like on the floor like crying screaming like it's so painful when I can't deal with it but it's so much less than it was and I think and I think the combination of the pill and the coil was definitely helping with that because as I say it has taken out that cycle so yeah I guess that kind of leaves us with where we are now I have those two methods of contraception um I'm taking pain relief as and where I need it whether that be naproxen that is something I'm prescribed to get asked a lot I love naproxen I think it's really great you do have to be careful though when you're taking it alongside something like Citalopram which I take for my mental health and you always need to make sure you're taking it with food as like any anti-inflammatory like an ibuprofen or something you need to make sure you're taking it with food because it can be really damaging on your stomach or you're taking Omeprazole with it um so yeah I take that I've got my bu patches if you haven't seen me slam on about these is this really bright I've just realized go on about um bu patches I talk about them all the time on my Instagram my tiktok they are my savior I've literally got one on right now they're great I use my TENS machine all the time a heat pad I've gone off hot water bottles because I had one split on me and it was really scary but yeah that's kind of where I'm now I'm just kind of managing day to day my main concern right now is I'm getting married in a year and I have no idea what this next year is going to look like in terms of pain and Endo thought of being in pain on my wedding day um is terrifying like really it actually makes me emotional because if anybody spoils that I don't know how I don't know how I I can't talk about that because it makes me really emotional so um my next appointment with Claudia the Endo specialist I'm going to discuss that and think and ask her whether she think I should have surgery before then my Endo is definitely more manageable now than it was two years ago like completely different like Worlds Apart but I just still feel like I'm dealing with too much like it's just it still just feels like a lot like I'm still having pain like maybe seven to ten days a month which you know is so much better it's not every day or if it if it is regular and I'm getting it several days in a row it's not all day anymore before I'd be written off like I couldn't move from bed like if I tried to get up I would literally be flawed from pain now it's not like that it's like I'll get like a couple of hours of pain I'll take some painkillers and I can go about my day which is like literally Worlds Apart but yeah I think I'm gonna round this video off now because I just wanted this video to be kind of my story and um I wanted to get this up on my channel because every Wednesday on my Instagram I do an endo DM clinic so you can DM me any questions or any concerns you've got about Endo wait I forgot to tell you I just missed the whole part of my story so earlier this year because my pain was has been getting increasingly worse since surgery um I had an MRI and I had a sigmoidoscopy to check that my Endo hadn't infiltrated into my intestine because I've been having trouble with bladder and bowel issues like it's a whole thing but anyway I had my MRI and that came back with my Endo has definitely grown back and there are some active sites of it there are some sites where it hasn't grown back which is obviously really good news but it's back on my like bladder about kind of generally like it was for the first time where it's quite widespread across my pelvis it scares me that it was picked up on an MRI is I don't know this for definite but it kind of because it is really hard for it to get picked up on these scans if it does get picked up I worry that it's worse I've been trying not to tell myself that but you know it's one of those things I've also been diagnosed now with fibrosis I've got fibroids in inside my uterus and outside I don't really know loads about fibroids so it's something I'm still learning about but yeah so that MRI I can't even remember when that was it was earlier this year quite a while ago now yeah I just confirmed that kind of things are growing back in aligned with the Endo that was confirmed in 2021 anyway my Claudia wasn't massively concerned you know she was excited to be expected it's gonna kind of grow back yeah I wanted to do this video as kind of a story of my story and just put it out there for awareness for also people to come to I get questions all the time about my diagnosis story and this is like a really easy way for me to just send you here and you can learn all about it I have like a three-page thing that I wanted to cover and I've literally covered these lines I thought I was going to be able to talk about all about like q and A's I've got about like private and NHS go into detail about pain relief and surgery and stuff but I think all of that kind of deserves its own time and I'll just be squeezing it into this video so let me know videos that you want to see specifically about endometriosis um I have loads of ideas already but I really just wanna make sure that I'm using my platform in the best way possible to get awareness out there so yeah I guess that it from me I hope you're well if you struggle with Endo I'm sending you the biggest hug or if you struggle with the symptoms of endone you're trying to be diagnosed sending you the biggest virtual hug if there's anything I can do to help I really am trying to push to the kind of endless side of my platform out there as I said Wednesdays I am in my DMs all day today is actually Wednesday so I'm getting this video filmed and then I'm gonna spend all day in my Instagram DM yeah if there's anything else you can do please send me a DM other than that I'll see you in the next video bye

Channel: positivami

Views: 8,374

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Id: se7-6Z3YVOs

Length: 24min 16sec (1456 seconds)

Published: Wed Aug 23 2023