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Endometriosis UK
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Finally diagnosed with endometriosis

Hi everyone! My names Hollie, i'm 18 and have just been diagnosed with endometriosis after a laparoscopy on Wednesday the 22nd on November and have just found this page! I had been suffering from awful pain during sex for years now, especially around the time my period was due but nothing showed up on any scans whatsoever. I was also unable to wear tampons due to this pain. The doctors always told me that nothing was wrong and sent me home because they couldn't find anything wrong with me. I knew something was definitely wrong and persisted in finding out what it was. It wasn't until a few months ago that a new doctor brought up the possibility of endometriosis for the first time, I was scared after finding out the possible consequences of endometriosis and the whole process has been very emotional. I had never heard of it before and am still new and fairly uneducated on the topic, but after the operation feel very relieved that i know what was causing the pain and that it has been treated for now. I really wanted to talk about my experience to hopefully help others in the dark that are going through similar problems and to involve myself in the community. I would hate for other people to be suffering after being told nothing was wrong when in reality there is but scans just don't show it. Additionally i am concerned that it might come back and would really love to know if anyone else has been through a similar experience and how you have coped; if it has come back and how you're doing. Thank you!

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Hi Hollie! I’m new to this too (I’m 30 😱) and just been diagnosed via lap this Monday! No idea if it’s helped at all yet but I had a mirena inserted at the same time! Mine was passed off as IBS for years but got worse after I had my 2 children. Just wanted to send hugs and hope you’re recovering well after the op! Xx

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awh thankyou so much the same to you! xx I found that it was such a difficult process trying to find a diagnosis and I too was told it could be IBS, luckily I stuck my ground and found it before it caused too much damage. Unfortunately a laparoscopy was the only option but fingers crossed it has worked! i'm in the middle of writing a blog post about the whole thing as i think its something that needs more awareness, i'd never heard of it before! hopefully in the future it will be talked about more and less people will suffer when its something can be treated especially in the earlier stages! I hope you're feeling okay and will start to feel better soon, the shoulder pain is the worst! xxx

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It definitely needs more awareness! My shoulder pain has eased, I’m actually feeling pretty ok now. Peppermint tea I think helped shift the gas and a hot water bottle on your shoulder will help with the pain! I’ve been sleeping with mine resting across my chest/shoulder and I’ve been out like a light as soon as my head hits the pillow, I usually struggle with falling asleep so I think il carry it on.. it’s like a cuddle but without the snoring 😂 ! Hope you feel better soon xx

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Haha yes I've become addicted to peppermint tea! and thank you for the tip ill try that as the shoulder pain is still quite bad xxx

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Hi Hollie,

I've just been diagnosed as well, on the 9th November. Like you, I've been struggling with pain during sex for years, and the doctors didn't really take me seriously.

My mum, sister and grandma all have endo as well, so I was at least prepared and was expecting to be diagnosed.

I hope you're feeling ok after your operation xx

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Hi Sarah! Thankyou i hope you're okay! thats exactly how I felt too. I started to become extremely frustrated and didn't feel like i was being taken seriously, my mum has had two ovarian cysts so that may have some correlation but nothing showed up on the scans which meant the only option was a laparoscopy xxx

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Hi!

My diagnosis took over 2 years (even though I had classic symptoms!). I had a laparoscopy in 2009 and then continued taking my pill continually to manage my symptoms until 2013 when we decided to try for a baby (I had been told that I had a 50% chance of having children after my op in 2009). I knew that my endo would likely return during the absence of taking my pill (loestrin 20), I fell pregnant (naturally) around 6 months after. I had no issues during my pregnancy and post birth I was symptom free for a round 18 months.

We then decided to try for our 2nd child and I went through the same proces of withdrawing from taking my contraception, it took around 12 months to get pregnant. My second pregnancy was more difficult and I had a traumatic birth (significant blood loss and a 10lb 1oz baby delivered naturally) since the birth of my second child my endo has returned and is probably worse than it's ever been.

Endometriosis is condition that is mainly not well known or understood. I have made my employer aware of my condition (I gave my manager lots of literature about so they can understand) as I can often experience painful episodes whilst in work. They have been very understanding so that helps, I also suffer with IBS with this which can be stressful. I find being open about it helps you as I used to try and hide my symptoms but this just added to the stress which made the endo worse!

I was 28 when I was diagnosed and have been very fotunate to have had 2 wonderful children so all I would say is keep an eye on your health and always be persistent with Dr's, you know your own body. My Dr misdiagnosed me at first which led to furthe issues.

Good luck and honestly having your diagnosis is half of the battle. Always ask your Dr what are your options and don't suffer in silence x

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Hi! i'm really sorry to hear about that I hope everything is okay with you! and i completely agree its definitely something that doesn't seem to be dealt with straightforwardly it was a battle to get to the point i'm at now which is definitely one of the things i want to change for others. I feel like if more people know the side effects and about endometriosis in general it will help people get a diagnosis. I was surprised they didn't bring it up with me years ago. it was only just a possibility a couple months ago and I've been in pain for four years! I also felt like Dr tried to be put of the laparoscopy even though I had the symptoms. I know an operation isn't something to be taken lightly but at the end of the day if people are suffering its better to find out as the longer its left the worse it can get. I also suffered with awful pain that felt like a chronic water infection, turns out my bladder wasn't emptying itself properly as i had a cystoscopy at the same time as my laparoscopy. I don't know if it has any correlation but i guess ill find out if anything changes! thankyou for your comment and good luck with you too! xx

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Hi hollie, I'm also 18 but haven't been diagnosed yet. My period pains are usually so bad during the first few days that I can't move and I get really agonising pain that makes me want to scream. My periods are quite heavy too. Sometimes mid cycle, I get really sharp pelvic pain but previously I just ignored it thinking it was due to dehydration or some other cause but now I'm contemplating going to the doctor to find out if it is endometriosis or not.

Hope your laproscopy recovery is going well! Sending love! X

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Hiyya! Thank you i am starting to feel better already! I have read on the NHS website that heavy and painful periods are a side effect of endometriosis, my pain also seemed to be a lot worse around the time of my period due the fact the endometriosis on my ovaries etc was having its own period in a way making it worse. I think it is absolutely a good idea to go to the doctors and talk them through how you feel. it seems to be something everyone finds really difficult to get diagnosed so definitely stand your ground if you feel theres something wrong, its taken me years! i also had so many ultrasound scans and internal examinations that showed up with nothing the only thing that let them be able to see that i had endometriosis was the laparoscopy operation, they then found the endometriosis and treated it there and then. obviously an operation is a big decision but i knew i needed find what was wrong with me. Thank you for your message and good luck! i hope you get to the bottom of it! xxx

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That's great to hear you're feeling better already! My periods are extremely painful on the first day which makes me feel really weak and wanting to faint. I also have to take very strong doses of painkillers for anything to even happen. I find paracetamol has absolutely no effect with my pain. I definitely will go to the doctors and stand my ground if they try to dismiss it. Before I assumed periods must be this painful but the pain at the beginning is so crippling. At least the operation was a way for you to finally get the diagnosis and get treated 😊 Thanks for your reply and good luck to you too for the rest of your recovery and thankyou, I hope I get to the bottom of it too! Xxx

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Thankyou and that sounds like the best idea, endometriosis really needs more awareness! I hope everything works out for you feel free to message me again if you want to! Xx

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You're welcome! And it really does need more awareness so more people are able to understand endometriosis. And thankyou xx

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Hi Hollie

I understand so much when you say about the docs not believing you. I have had to deal with the pain I was in for 10 years only to be diagnosed on Oct 2nd this year. I final was believed after years of dealing with this pain the only thing was I ended up going private because I couldn’t take the pain anymore & it worked the specialist I met listened to me which has never happened to me before when I was on the nhs I was always just passed about like a parcel by everyone else I saw about the pain. Like you I was told I had nothing wrong with me it was all in my head & also they said I was doing it all for attention. When you get a name for what you have been battling through & now you can say to all the people who doubted you they where all wrong & you where right the whole time about the pain being there. I had my laparoscopy on Oct 2nd this year. All the scans I had before this came back as nothing was wrong after years of being told “it’s in your head” a part of me was like could this pain really just be in my head? But the other part of me was like this pain is just to real to be in my head & I have to keep fighting to be heard. I fought with docs because like you I want to help others & let them know they aren’t alone because I often felt like that myself & when you talk to people who haven’t been through this they don’t really get how bad the pain can actually become. I’m really glad I found this page just wish I had found it sooner than I did as I only came across it recently. The only advice I could give is using a hot water bottle it didn’t take away my pain completely but it helped a bit. I wish you all the best 😊 x

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Hiyya! I’m really sorry to hear that! I can relate completely! I felt alone because I had no idea what was wrong and I struggled to describe it to people who didn’t understand me, it completely took over my life and I too felt passed around, I ended up going private for the same reasons and now I just feel so relieved I can put a name to what was going on, it’s been very emotional haha! It’s also been really nice to chat to others on this page as we can relate to eachother and help others x thankyou and I hope everything’s okay with you now! Xxx

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Hey I know it’s been a long road that we have all been on to get this far. My main goal was I just wanted a name because I just felt no one believed me when I tried to explain they would just look at me like are you sure it’s not in your head! That’s probably the most annoying question people can ask when your going through something & you have no idea what’s going on in your own body. I’m so glad I can now talk to people who understand how hard life can be when your put in that position. I really hope I can help people by telling my story. This pain also ruined my life it has completely took over because of how bad the pain becomes at different times thank you for replying to me I hope everything goes well for you 😊 x

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Hi, i just wanted to say i relate to your post so much, your story sounds pretty simular to my own but i lost a baby due to my endo damaging my fallopion tubes, iv had 2 lazor treatments with in the last 10 years and i am now suffering with familiar issues all over again and have been ignored even though my records show im an endo sufferer, people just dont want to listen and send you home saying there is nothing rong, drs need to wake up and see endo as being a problem for many women.

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Hi

I’m so sorry to hear that. I completely understand how you feel we should not be made to fight to be heard but that seems to be how we have got this far. It’s such a shame docs don’t listen to us. They told me it was all in my head or I made it up for attention. I was trying to explain why would anyone make this up & want to live like this! The pain is unbearable but it’s not good enough for docs to listen. I feel they don’t really seem to care there has been plenty of women who have gone through this horrific pain just to be told have some paracetamol. I think docs are a complete joke & A&E I have been there multiple times barely able to breath the pain had got so bad it hurt way to much I was sent home with paracetamol I just couldn’t believe that they would something like that. Then people who haven’t been through this horrific situation wonder why you have lost faith in docs.

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Hi hollie, im sorry to hear about your journey, the whole experience is not a good one and im sorry to say that yes mine did come back, iv had lazor treatment twice now and after 10 years since my first diagnosis i am suffering with yet more problems , im under a consultant and having several tests done but i believe the endo has returned and has coursed me more issues, with every period cycle you have there is a chance your endo can come back, the only way to stop it is to not have a monthly cycle but for us women its not that easy,

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Hi that’s awful I’m so sorry to hear that! I’m gobsmacked at the amount of people that have had to fight for a diagnosis I don’t understand it, it’s a serious health problem that will only get worse with time! I was dismissed because of my age but in reality it’s common for women of all ages! I’ve had endo since I was fifteen or younger! I really hope you start to get some proper treatment and help xx

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hi Holly

well all i can say is ouch surgery is not nice having had 12 sugeries now in total.

i have done the hormone therepy 2008 it was not for me horrible side affrects.

then there is the diet you can look at make life style changes that helps listening to your body.

you are not alone

there is a new Drug out called visan my surgeon wanted to give it to me me a few months ago its worth asking you doctor about it its apparently very very good and will keep endo at bay and pain.

then if you do want kids do not hesiste the quicker you fall pregnant endo normaly goes away. in my personal story i had 4 missgareges and ended up having a my womb removed due to endo.

get strong soon and you are not alone there is alot of little life style things you can do so stay postive

mich

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