Endometriosis... personal experiences - Endometriosis UK

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Endometriosis... personal experiences

Elliethealice profile image

Hi everyone... please help.

I recently turned 20, and have started learning about endometriosis. All my life I have had incredibly painful periods, insanely heavy and I would bleed through sanitary pads easily. I’m tiny I weigh 6 1/2 stone and I’m 5ft! The blood I lose is so bad I have to have iron supplements every month. I am currently on the pill, progesterone only, and it’s great as I only have a period every 3 months. However I still get the symptoms every time I come towards the end of a packet and potential cycle.

I started finding it puzzling how my symptoms weren’t like everybody else’s. I first noticed the most horrific pelvic and lower back ACHE. I could describe it as a pain it was the most horrifically radiating ache. After this is started experiencing bizarre leg pain, starting in my upper thigh and radiating down to my ankles? Then I get an almost flank ache too!

Again, a hideous ache. Nonetheless, I don’t get period ‘pains’, it is the horrific aches, fatigue, weakness every time I am due on. As well as crazy sore boobs, nausea and low moods.

Anyways. I haven’t been to the doctors yet because I am PETRIFIED. I know this is a Endometriosis, everything on the symptoms and stories from other women on this forum I can relate to. I was wondering if some lovely ladies on here could give me a little bit of support, what the diagnosis involves and a bit of the science behind it? As a young women I am petrified of my fertility being damaged and anything else.

Thank you so much everyone.

Ellie xx

33 Replies

Oh yes, I understand your symptoms and feelings but you must go and get a diagnois sooner rather than later if you wish to conceive. I know that conception can happen with ladies with Endo 2 of my friends have done so. You never know it might not be Endo.

Elliethealice profile image
Elliethealice in reply to Linley

Do you have any idea what this may be if not Endo? Thanks so much Linley. I really appreciate your comment.

Linley profile image
Linley in reply to Elliethealice

Sorry Elliethealice but I am not a clinician so it would be inappropriate for me to comment as we are all different. Please go to your GP with a list of symptoms and questions and start the ball rolling to get you sorted you are young so the chances of a successful outcome are good.

Elliethealice profile image
Elliethealice in reply to Linley

Thank you so much Linley. Really appreciated.

I have the same areas of pain now (leg pain, lower back pain, flank pain before surgery) but I first noticed tailbone pain around the age of 19/20 and I put it down to my job at the time. In my case it did turn out to be endo and that was one of the first warning signs for me. Of course, everyone will experience different things.

I was too mortified to go to the doctors when all my problems first started and sort of hoped it would go away on its own (stupid I know) but I only got diagnosed with endo this year (I'm 25 now) and when they did the laparoscopy they saw it had started on my ovaries. Luckily it was in its early stages so they were able to get rid of it quickly.

Endo has also caused me other problems (hurrah for pelvic floor dysfunction) but I understand why I have these issues now and how to treat them (I'm on the pill too) I still have some pain after my surgery but it's a lot less now.

Annoyingly the only way to diagnose endo is a laparoscopy. I personally think this is ridiculous, but its the way doctors do it apparently 🤷‍♀️ but it is important to know whether you have it or not.

Hope you feel better soon 💕

Hey sweet.

Thank you so much for taking the time to reply to me. I think with things like this as a woman you can feel very much on your own, or you are made to feel like it’s all in your head. I never understood why I had crazy pain in the areas I do. Till I did my research on Endo. I’m petrified to go to the doctors and have a Laparoscopy. It honesty frightens me so much. I’m worried it spread or it’s really bad. I’ve been putting it off since I was 18 making the GP call. Do you find Endo impacts your bowels too when due on?

I really appreciate your time. It means the world to me.

❤️

You're welcome 😊 yes, I agree. I got fobbed off for years from doctors not believing me... It can be very disheartening.

I was scared of surgery too, till I realised the benefits outweighed the risks. You wont know the severity of it until you have a laparoscopy. I was misdiagnosed to begin with (first gynae told me my ovary was stuck due to endo adhesions and I panicked for months thinking I had severe endo and that my life was over) but then after my surgery, it turned out I had mild endo, nothing too bad at all.

I understand you not wanting to call your gp. I certainly didnt want to either, but it did work out for the better in the end.

Ooh yes, I used to get awful constipation/diarrhea when I was on a period, but not anymore since my laparoscopy (see, there's always a bonus 😄).

Awhh you're very welcome. You're always free to pm me if you want to talk 💕

Thank you for your time Bubble_by.

Can a gynae not detect any early stages of Endo through a examination? I know when I had a lady examaniton I was told my cervix was very raw and inflamed and they put it down to thrush.

I think I’m going to get the courage and ring the doctors next week. I’m so scared but it needs to be done. I am so relieved I am not the only one with symptoms like mine. I always worry I’ll say what I get and no one will be able to relate and then I’m really stuck. But everything Endo suggests I relate to all the time! Everything but painful sex?

Is Endo genetic? Why does it suddenly happen? Are you born with it? Thank you so much for listening. I won’t hesitate to PM you thank you

Ellie ✨🤍💕

Endo doesn't tend to show itself during examination, but there may be other factors that could point to endo (e.g irregular bleeding or pain upon examination).

Perhaps it was thrush at the time, but they should give you a swab to do to rule out current infection.

Yes its a good idea, it is daunting but you will be in a much better place for it. This forum is always great for emotional support.

See I've always had painful sex, but of course, everyone is different.

I believe there is a genetic factor with endo. My mum has it, as do both of her sisters and we suspect her mum did as well. Sadly, it is just one of those things, but that does not mean you have to suffer.

Sending you courage for next week 💕

Hey lovely.

Well that’s intriguing you’ve said that as I always have HORRIFIC pain when having an examination. It’s awful. Just awful.

This forum has been a amazing I only joined today yet feel so much better and not on my own. Nor do I feel like it’s all in my head anymore.

See I find sex painful in the very beginning but once it progresses it isn’t painful. However afterwards I do get a lot of pain.

Interesting you’ve said you have a family history of Endo. Really interesting. Thank you for sharing that. And thank you for your kind thoughts for next week. Will keep everyone updated.

Ellie 💖💖

Also, hi Ellie, just to say.. my auntie had excruciating pain just like you and when she had the laparoscopy with treatment (laser removal of the Endo tissue or something like that) she said it was 100 times better and was so worth having the laparoscopy, so honestly it’s worth it! You can do it💛

Hi, I just wanted to ask, I’m 18 years old and have been booked in for a laparoscopy because of several symptoms linked with endo. I am very scared but I know it’s for the best and will help in the Long run, it runs in my family aswell:/ I I just wanted to ask Does the painful sex get better after your surgery/laparoscopy ? Or does it stay the same ! Thankyou.. reading this has put me at ease. I was scared to join and comment but I really wanted to ask as idk how else I would get the opportunity to ask this! Thanks! 🤍

It's awful isn't it? I remember my mum talking about it when I was younger, but never really paid much attention to it. Then I was bombarding her with questions last year 😅 in my case I also have pelvic floor dysfunction so it still hurts. But it has got less painful since my laparoscopy. I hope to visit a pain clinic soon to help with this.

I hope your surgery goes well 💕

Hey Ellie, so sorry you are having so much pain. Try not to be scared and go to your Gp. Hopefully she will refer you to a gynae and then have a laparoscopy. This is the only way to be certain you have endo. A laparoscopy is a simple procedure under a general. Try not to be frightened. Once diagnosed, you can then be treated and be rid of the excruciating pain you suffer at the moment. Endo affects us all in different ways. Try not to get too engaged with horror stories and frighten yourself further. Keep your chin up and ring your GP and get the ball rolling. Good luck. Xx

This message made me want to cry. Thank you so much. You are all so kind and my goodness is this helping more than you all know. Thank you so so much. 💖😭.

How long is a Laparoscopy? Obviously at the moment with COVID this puts me off more. I’m already an anxious mess and I’m trying to find the courage in me to get this ball rolling. Do you suffer with similar aches pains? What symptoms and experiences do you get with Endo? What does a Laparoscopy involve? Thank you so so much. Internet mums and best frienda everywhere in this community I’m so thankful. 🤍

Please go to your GP and get referred to a gynaecologist so you can’t be treated correctly! I feel your pain hun, i was 13 when mine started and got diagnosed it’s very scary when your young and it took months for me to agree to go to the GP to get the referral but it’s the best thing I ever did. They help to manage the pain and bleeding in more ways than the GP can.

I didn’t realise it was this common to get the pain that young as I was around this age too and the doctors just kept on saying “it’s unlikely, you’re very young will try this and try that...” and kept putting off the idea, obviously I’m not sure if it is endometriosis yet but I’m glad that they’re finally doing something about it like 4 years later even if it is a scary thing to have done !

luckily for me i was having an operation to have a cyst removed that was quite large and just to have a general look around due to my symptoms. and that’s how i got the diagnosis of endometriosis so young. Otherwise I imagine I would be like a lot of people and still be waiting for a diagnosis for my symptoms! So I’m quite lucky in that way -

however to this day im still not fixed ( never will be I guess 🤷🏼‍♀️) and right now I’ve been suffering a massive flare up for 3/4 weeks which has caused me to go to a&e unfortunately.

Back in 2005 it was something that not many people had heard of or none in people of such young age, so yes me and my family was very shocked and had to do a lot of research on the condition. But now it is becoming more and more common in young teenagers unfortunately.

I wouldn’t wish this condition on my worst enemy!

easier said than done I know but you don’t need to be scared! So are you having a laparoscopy done?

Yes I’m just waiting for an appointment to come through, it might take a while because of COVID, but yes me too I got sent to a&e by my gp because they weren’t sure what it was, they thought it could be appendicitis because of the abdominal pain and sickness I was getting, but apparently these can also Be symptoms Of endo. So I got referred to The gynaecologist after I was discharged from hospital to do further tests- hence the laparoscopy. I honestly am at the stage where I think I’m so sure it is endo that if it isn’t I have absolutely nooo idea what it could be !! I have literally all the symptoms, I just want it sorted ! :( as does everyone else I Bet!

So fingers crossed for both you and me that these appointments come through soon🤞🏽 I’m pleased your getting the laparoscopy done. Just wish my doctor would just do me one again as he and I both know it’s my main cure and the thing that gives me relief from pain and bleeding for 2-3years so he doesn’t have to see me again for quite a while 😅

I know the hospitals are starting to do a lot more clinics now, let’s pray we don’t get a second spike in the mean time otherwise it’s going to give us another massive set back! 🙄

Yes there signs of endo, there’s quite a few signs and symptoms for it now it’s becoming more and more common in women to when I first got diagnosed.

Well I hope you get your diagnosis soon. In some ways I hope it isn’t endo for you as I know how horrible this condition is but then in other ways if it is then I’m glad because you’ve finally got an answer for your pain!

Stay strong 💪🏽

Thank you so bloody much Jessica. I really appreciate it. 💕

Anytime hun. Just message if you have any questions or queries. It’s horrible thing to go through and yes it is very scary. It’s great there are these sites out for people to use. I only joined last night as they were never really around when I first got diagnosed so thought it was time to talk to others that are also suffering mentally and physically with this disease as they can understand and sympathise more than those who don’t have the condition. it’s great to see all the support people give each other, and read about other people’s stories to know that your not alone in this xxx

Hi Ellie,

I’ve been in a really similar position. I am 17 and like you suffer with horrendous pain and weakness around my periods and bleed through multiple pads at a time causing iron deficiency. I was also terrified to go to the GP but it’s definitely the best thing to do! Request a female GP if that would make you more comfortable but that starts the whole process and allows you access to the treatments to help. I was officially diagnosed via laparoscopy 2 days ago and am now using the coil and pill to control my symptoms. The quicker you get help the less chance it has if affecting your fertility if it is endometriosis! Good luck,

Sarah xx

Thank you so so much Sarah you don’t know how much it means to me all of this support. How was the Laparoscopy for you? I’m petrified of this in the future.

Ellie ❤️

The first few days have been painful but to know what’s going on and how to deal with it is really worth it, the scars are only small and I have managed to catch the Endo before it’s risked my fertility- the longer it’s left the more chance it has of effecting the reproductive organs. I was terrified too but taking those small steps could really make a massive impact on your life and you may find a treatment that works without need for surgery, and I’ll happily answer any questions I can!

Sarah ❤️

Hi,

I hope you don’t mind me asking but how long did you have to wait for the laparoscopy, because of COVID I’m worried it’ll be ages! Thanks

I don’t mind at all! I originally was supposed to have the laparoscopy in April after first discussing it around Christmas last year but because of COVID I have only just been able to have it- but I was shielding so I think that added time as I wasn’t able to go in to have it any earlier. My best advice is to keep pestering! I know it can feel like you’re being awkward but keep reminding the doctors of how much you’re suffering and don’t be modest about it, I started being taken much more seriously once I did this! Xx

Hi Elliethealice, so sorry to hear that you are going through this. My problems didn't start until I came off the pill in my mid twenties so I'm kind of glad that you have time to get a diagnosis and get some treatment before you need to start worrying about fertility. So I had grade 3 endo but it took me 7 years to get a diagnosis because they kept telling me I had ibs and giving my ultrasound scans which showed nothing. When I finally had a laparoscopy it was all over me. As far as I know, a lap is the only way to really accurately diagnose endo so anything else may be a waste of time. I read somewhere that a blood test may be able to diagnose it in the future but I'm not sure if that available yet.

Try not to be scared, like I say, time is very much on your side but I will say this. It may be hard getting doctors to listen to you. If you are sure it is endo, you need to get a lap and don't take no for an answer. I was fobbed off for so many years I ultimately lost my chance to have a child and spent years in pain and emotional turmoil. You must push for what you need. You will need to go to your gp and ask to be referred to a gyne specialist. Then you will have to push them for a lap, only then will you be sure. I really hope that helps and that you are taken much more seriously than I was. Let us know how it goes x

I can relate to those symtoms. Try to get a diagnoses soon as you would be better offfor that. Do this would most likely be preserved the sooner to deal with it. YOU do not.need.to be in so much pain.darlying.

Please read my profile for my journey and please read the book I recommend. It will save you years of wasted time. Don’t let anyone operate on you without reading it or at the very least visiting his website.

Best wishes Nina

Hello Ellie,

Sorry to hear of your ordeal and yes, it is terrifying to think about physical check, especially for your age. I, too was too scared to check (in my 40s then but still) until it became unbearable, year after year of bad markers readings - CA125 and CA19-9 though my GP advised me to go a specialist 2 years earlier . God is good to me.

Do not try to self-diagnose as it can be misleading too. Ditto to all other ladies - you should go to a "good and sincere" doctor as soon as possible and find out what it is, first.

If I can offer you some advice from someone who ignored it until too late. I have had painful periods (ended up in the er many times) and heavy long bleeding for as long as I can remember. I asked my doctor once about 5 years ago about Endo and she literally laughed and asked what I could possibly think that. She also missed a severe concussion for a year, but I digress. I now have 15 chronic conditions for life. The gynecological conditions I have are Endo, adenomyosis and fibroids.

One thing people don’t realize is if you leave Endo untreated you can cause your body to get central sensitization which can then lead to fibromyalgia. I have fibro and it’s way more painful on a daily basis than my Endo. All those muscles and nerves get used to being bombarded by pain that they start to malfunction. This happens after a long long time of not being treated. I’m 35 now and just was officially diagnosed in February with stage 4 recto vaginal Endo. And that is the other reason you don’t want to leave it. The longer you leave it the higher chance you have of it growing into something more serious. My rectum was fused to my vagina on the inside. It took 2.5 hours to remove just that portion. I was actually fitted for where they’d put the colostomy bag (for your fecal matter). Thank god I had two amazing surgeons during my surgery and I didn’t end up with a stoma.

When I was 28 my husband and I tried for a baby for a year. We got pregnant and miscarried and couldn’t get pregnant again after trying for another 6 months. I know now that Endo is probably what impaired my fertility. I was in a serious car accident 5 years ago that had left me unable to work or have children.

I don’t say all this to scare you. I just say it because I wish someone would have told me to listen to my body when I was 20. The biggest piece of advice I have is listen to your body and don’t give up. Stand your ground with your doctors.

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