Endometriosis UK

It's finally happened

I am so relieved. I had my lap yesterday (woke up from it about 15hrs ago). I realised something must have gone on because I was called in at 10 and sedated/under by quarter past and the doctor was always adamant I wouldn't be in more than 30 mins unless she found something and she didn't think she would yet i was out of the op at 12ish. Well... She did!!! I have endo like I have been arguing since I was 10 and I'm 20 in less than 2 months!! (Wouldn't have always been endo just chronic pain). I've had it blamed on my nerves, on constipation, on sexual abuse (even though I've never been abused they thought I was lying - really hated that gyne). I was seen at St Michael's and it's an endo centre and it was the specialist doing the op along with some student doctors.

I had a nodule of endo removed, another mass removed to unstick my (Right?) Ovary, they believe I have some sort of cyst in my left ovary but couldn't remove as I hadn't given permission (again I think simply because all my ultrasounds etc never showed any issues so I don't think she was expecting anything - they never seem to completely believe me). And the back of my womb is stuck to my bowel completely - she is hoping this isn't a problem at the moment and I will be seen in the endo clinic at the next available app probs in the new year and see if the pain has improved. If it has then I guess we will just wait and see but if it hasn't then she said we need to discuss planning a bigger operation alongside a bowel specialist. I also had my mirena removed as that's been causing me issues since I got it in in February. That's one of the reasons many of the doctors have used to argue that nothing gyne was wrong... simply because if I had endo it should have reacted to at least one of the contraceptives I've been on but I've tried telling them... most work for up to a year but my body seems to get fed up of it after that time and then the bleeding starts again... although the pain never stopped throughout the whole process.

I am so happy... all these years of not being believed by anyone. Having to argue that my pains really are more than the normal period pains. Getting in trouble with schools all the time due to poor attendance because I couldn't manage the pain and the doctors wouldn't help. It's done.. the hard part for me is over. Now I have a diagnosis so much is solved for me and I am almost in disbelief because I've had it drilled into me for so long that I'm overreacting that I really started to believe it. I've seen so many gps and gynes and I am so glad I ended up with the one I have now (by accident as I randomly clicked a hospital out of 4 choices) as she has taken me more seriously than the others I've had. Not completely but still better.

Only problem I had in recovery was weeing. I drank as soon as I was awake before I was even taken back to the recovery room. Had a biscuit when I got back and slowly ate more and drank A LOT. But the weeing just wasn't happening and I was terrified I wouldn't be able to go home as even the nurses were remarking about it. I had my overnight bag but I just wanted to go home with my partner and be comfortable. I eventually managed it and as soon as I did I was out within 20 mins it was great haha.

I'm finding myself pretty mobile although sore, but I have no choice because I am weeing for Britain over these past few hours since getting home and it's interrupting my sleep getting up and down and up and down! The gas pain is annoying but the peppermint tea is a saviour - but the boyf is asleep in his room atm so tramadol will have to make do. Honestly the sore throat is the worst of it my throat is so swollen and red/scratched. It felt disgusting and still does.

Sorry for the crazy long post I just needed to vent and celebrate as I don't have many people irl that I can talk to about this.

I can finally officially say - I have endo - I am not overreacting and it is amazing to be part of such a phenomenal group of ladies who all support each other.

Thank you thank you thank you!

:D <3

Ps sorry if something is misspelt or doesn't make sense I am exhausted as didn't manage to sleep in recovery and barely slept since getting home!!

14 Replies
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Hi,

Just read tour post and wanted to say how pleased I am to hear you've got the answers you wanted. I hope your recovery is quick and everything else goes smoothly.

I too am currently reviving and cannot sleep for the life of me. It's 3.48am and I've maybe had 3 hours sleep so I can sympthasise with the lack if sleep X

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Thank you! The lack of sleep is infuriating. I wanted to sleep so badly at the hospital and really wish I did now! I keep dosing off but it doesn't last longer than 20 mins and I'm awake again for another 40-50 mins before I dose off again!

I hope your recovery is going well other than the sleeping?! :) x

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Oh my gosh it's horrendous isn't it. I thought I'd sleep better here woth the meds I'm on but nope......clock watching all the time. Glad to hear it's not just me being a night owl. Hope you manage to catch up through the day like me. X

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Haha I hope I can catch up too! Otherwise today is going to suck not doing anything but not sleeping either Haha!! x

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ps a side effect of tramadol is insomnia 🤕😳

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Yeah I know.. I only take one tablet and it doesn't tend to affect me (if been using it on and off since Feb- only when I have super bad pain though as I understand it's addictive) The main thing that woke me up throughout the night tonight was the needing a wee Haha! And then once I was up the gas pain started so it took a while to get comfy again. Lose lose situation really 😂 going to try and stay positive though.

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Hi,

I just read your post & you sound so similar to my situation. I was told by doctors that there was nothing wrong with me but I was like will if there’s nothing wrong why am I in the most unbearable pain? Like you I had to fight for my answer. Doctors told me “it can’t be that bad” which to me it was like hell because I felt like I was being stabbed/cramping pains. I ended up having to go private because it had been 10 years. I have suffered with the pain since I was 15. People/doctors told me it was in my head. When people judge you for something the don’t understand is the worst feeling ever! Then the private gynae specialist I meet decided to help me I had my lap on Oct 2nd this year. My voice had finally been heard then I was told I have endo which was amazing just to have name! So now I know I was right. It wasn’t in my head! I’m so glad that I now have a name am sure you feel the same. I was told they probably wouldn’t find anything & they did endo. Sorry it is such a long reply. Hope your recovery goes well xx

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Don't apologise! It's really good to read a story similar to mine. Thankfully I didn't have to go private although to be honest this gyne was my last shot and then I was honestly just going to give up until I couldn't cope any more and then see if I could afford going private with anything I would have saved with my student finance. I just hate how its drilled into our heads that there is nothing wrong! I was at my orthodontist appointment the other day and because she was a new dentist she asked me a load of questions and we just had a long chat whilst waiting for the specialist to check something and I mentioned my lap coming up and we talked about how even she can see that throughout all the doctors she knows women health care is not taking seriously enough. She said 'I honestly can't understand how a male can go in to the doctors with abdominal pain and be seen to straight away with sympathy yet 9/10 females are told to get home and deal with It' apparently she even had a doctor who was an ob/gyn herself who had a baby and fractured her pelvis in the process and she waited 3 years to get it diagnosed because the doctors she saw just said it was hurting because of the birth!! It's insane!! I use to cry at all my appointments with any medical person in regards to this pain and they would always ask if it was anxiety and some of it was simply because I didn't want to be turned away or mocked.. But it was mostly frustration as soon as they turned the subject to what they are going to do and it was never instant help.. It was always try this tablet have this implant. Now I don't have to go through that anymore with the weight on my shoulders of thinking they will think im lying or being a hypochondriac.. I can go through it knowing I have a name for what's wrong and I am not going crazy. I can finally properly stand my ground with this and it's amazing - especially when I never thought it would happen. I thought I'd wake up and be told they couldn't see anything so I'll be referred on to the pain clinic or something. So.. all I keep saying in my head is screw all the doctors and gynes that didn't believe me!! I understand why to a degree but past a point of pain and constant bleeding it just becomes a pisstake!!

I hope you've recovered well with no issues?! :) x

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The health care for women is disgraceful. I mean the amount of time we have to wait to been seen to is crazy. Do they think we are going to the docs for the crack? Like really the amount of pain I have been in & they are asking stupid question like does that hurt? Like are they serious! I once was asked while getting bloods took did I have veins! I just stirred at the nurse like should you even be taking blood? I really don’t understand how they let women live like this for years. Then they told me I was a “healthy young women” & I looked at them like if this is healthy to you I wouldn’t like to see unhealthy, then I’m also thinking how can I be healthy if I feel like my body is trying to kill me. They do take the piss! The funny part of it is I found my gyne on google, I know it sounds really dodge 😂 but he was a specialist who knew about PCOS & endo so I went with him because he listened to me, he was also my last chance I just needed to know what was wrong with me & I was getting tired of being passed from doc to doc & put on more & more tablets. As for recovery the pain is still there & just as strong but I had a dull cramping pain which is now gone & the intense cramping/stabbing pain is still there but has became more frequent 😢 the intense cramping/stabbing was like maybe once a day then the dull cramping was the frequent 24/7 pain but now it’s gone, it’s been replaced by the really bad cramping/stabbing pain which is maybe every few hours a day, how long it lasts always changes it could be 10mins - 6hrs or more which is like hell for me but I have a name so me & the pain might just have to get along a little longer hopefully but I hope they find out what else is wrong with me. How long did they tell you your recover time would be? Thanks I hope your recovery goes well for you 😊 x

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All I've been told is I can have a 2 week sick note... which they forgot to give to me but I don't work so hopefully my uni is happy just with the discharge summary I have. I'm going off of what people have said on here, going to rest for a week.. do some normal things the week after slowly easing myself into it and then see what happens. But I wasn't expecting treatment so I don't know if the fact they actually cut things out will hinder anything. I'm hoping it helps with some of the pain. I kept having right abdominal pain before now to the point where I was terrified it was my appendix but it always left within 10 hours... And so I'm assuming that would be my stuck ovary causing the problems with that... But even with that gone I don't know what other pain is going to come to light. And if it is a cyst on my left ovary I'm terrified it's going to burst. But again, in the past 2 months I've had 2 sessions of EXTREME pain.. couldn't even stand or anything was taking any painkiller I had to ease it and was crying my eyes out but I didn't want to go a&e as I felt I would be dismissed and they'd say it was something so simple... But now I'm starting to think they may have been cysts or something... as I never had a pain like that before - and I'm terrified of having it again it's horrendous.

I really hope they figure out if they can help you some more that's gutting that it's not done much to improve. I hate the fact it's all so trial and error like. I wish it was straight forward but the entire process is so fucked! Now you have a diagnosis will you be coming back on the nhs and demanding a specialist centre or staying on private? X

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I totally get where you are coming from I myself have found myself in that exact position where I had be to A&E multiple times in tears & in excruciating pain. I could hardly breathe it hurt my stomach to much. I would just be sent home with some paracetamol! That sounds horrific what you have been though I hope they get to the bottom of it because it’s a joke that we are just told get on with like nothing is happening us. It’s just such a shame that we aren’t taking seriously just because we where young at the time of the pain & we had to go though it for years before they listened. I really hope in the future more is done about young girls getting took seriously when they have something wrong with them.

The surgeon who done my surgery moved me to his nhs list so I think I’ll just stick with him because he is specialised in both endo & PCOS. He is the first doc who actually listen to what I was telling him so hopefully he can shine more light on why the pain isn’t much better & what to do next or refer me to someone else. I really hope everything goes well for you best of luck 😊 x

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I wish you all the luck in the world hopefully we all get sorted soon.

I think out of everything what terrifies me the most is fertility. I'm part of a big family and I really want to have children within the next few years once I've finished uni and started a life and good foundations with my boyfriend of almost 5 years.

I'm scared the damage will be too much - which annoys me so much because if they believed me earlier it could have all been avoided. But I won't know until I try and I hate that 😠 I see how many ladies on here go through it and it's horrible that so many situations could have been at least helped if it was taken seriously to begin with.

Hope all goes ok with your health in the future :) x

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Congratulations! Just read your post and it sounds like you can finally start moving forwards. I was diagnosed late 2015 with endo and had a laporoscopy late 2016. I always just thought it was “normal” period pains until it go so severe I ended up doing a 12 hr night shift doubled over and thought it was my appendix! GP was amazing and knew what it was straight away and referred me. I found sleeping sat up helped with the gas buildup and just making sure my phone was next to me (I got stuck in the middle of the night laying almost flat and couldn’t catch my breath cos of the gas under my diaphragm) and making sure you follow instructions and take it easy! Good luck with your recovery.

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Thank You! Out of everything sleeping is the most difficult for me at the moment. I struggle to find comfort on my back and I want to turn but it's been too painful. But I also feel rather unwell at times it's not pleasant. I'm really hoping it passes soon as I haven't been able to sleep during the day and I am exhausted as it is! And I love my sleep haha!

Thanks :) x

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