I am 18 years old and about a year ago I had a laparoscopy and was diagnosed with Endometriosis. I am just needing some support.
I have been through every single contraceptive pill possible and cannot get on with any of them. Either depressive moods or making the pain worse. I was told that my only possible options where to go on an injection (Zoladex I think) to induce the menopause, have a coil or to have a child?! As you can probably tell, I didn't want any of them! So I braved it and came off all medication and for a fair few months I was fine thankfully.
But now my symptoms are coming back worse than before; the pain is getting unbearable to the point I am struggling to even walk and my moods have crashed completely. My gynecologist and doctors have basically washed their hands of me as they don't know what anymore and because, in their words, I am "so young".
Would just like some advice.
Thank you so much, I do appreciate it.
Written by
Harpyiai
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So sorry that you've been diagnosed with endo'. It really does make you despair how much people have to go through before they get the right help. The BSGE the British Society for Gynaecology Endoscopy has a list on their web site of accredited hospitals that work with women who have endometriosis, google it. Then maybe you could ask your GP to refer you to one near you. I've found that Drs who are little more informed as to how this affects us are better at coping with our condition. In my experience The majority of GPs just don't have a thorough understanding and sometimes even gynaecologists aren't aware of up to date info' on the condition. You could also Google Dr David Redwine, he's a specialist on endo in The U.S. And has published lots on it. I think he specialises on excision of endometriosis. I know when you feel so poorly it's hard to keep fighting, but this is your body (and your mind!) and you must inform yourself and seek out people who can help you. There are so many fallacies about endo', "get pregnant now or never", "getting pregnant cures you" or "get rid of your internal organs and you'll be fine!" All of which are rubbish! I hope you get the help that you need, keep your chin up chick and keep fighting Xxx
Have you tried looking for natural ways to manage your pain and symptoms. I have heard that Serrapeptase can apparently dissolve the endo tissue. I was also told to go gluten free and that did reduce my pain. There are lots of other things to try too if you have a look on the web. Just make sure you do plenty of research though too to make sure you are being safe. But giving up gluten at least wont do you any harm but can be quite annoying because it's in lots of things. But worth trying it.
Don't worry there are still many things you can do and try to help xx
Hi just a word of advise Zoladex isn't supposed to be given to anyone under the age of 23. This is nhs guidelines. You need to look on the BSGE website and find a specialist near you then go to GP and ask for a referral to them. I'm assuming that your lap was just diagnostic. What you need is excision surgery. Keep fighting your corner Hun I know it's tough but you can do it. Good luck. Also search on here for a lady called Lindle she great and will be of much help.
Sounds exactly like me hun. It got to the point where i literally had to crawl to the doctors (phone line was busy all morning) and had to talk to the receptionist. The pain was coming in waves and it honestly looked like i was in labour. I still havent been taken seriously 4 years late (at 22 years). It's annoying but doctors seem to think that as you grow up, you grow out of it!?!?
Have you tried acupuncture? Its the only thing that worked for me mum
Also about the baby thing, i've been being told since i was 15 to have a baby. Its ridiculous as even then your symptoms come back after pregnancy or stay with you throughout pregnancy anyway!
I dont know what else to suggest hun but here is a big virtual cuddle for you (((hugs))). Its tough but normally endo comes in cycles. You are probably going through a bad dip.
Hi! I had mine diagnosed at age 16, and had 4 grapefruit sized cysts removed and lots of patches lasered throughout my pelvis. I had had severe pain for years and was fobbed off by GP until I collapsed after school one day...had a nightmare for a year but won't bore you with that here! One thing I would say is that living with endo isn't always easy but you can have normal times too, it's important that you take control of it early on, rather than let it get hold of you, easier said than done I know!! If it's been a year since your diagnosis you can't have been given long to adjust to each pill I'm surprised they changed you so quickly. Most of the ones I tried were for several months each. I tried them back to back for a few months then a 7 day break, then back to back again. The initial undesirable side effects did ease, but then I got other effects so had to change.
If your dr said that the way to get rid of it is to have a baby, then your consultant needs to bring his research up to date and get out of the 1970s! I would def ask your GP for access to a second opinion or change your GP!
Zoladex wise I had a 9month course when I was 17, and have had numerous courses since of different lengths and I'm now 33! I wasn't in a position to not have it as my endo was severe and I was doing my a levels and wanted to be a dr so couldn't spend time being ill, so for me there wasn't time to think about not trying it! I'd already had regrowth and another lap by that point so had missed college plenty already, and I'd already had to change schools as I'd missed a year and didn't want my friends to be in the yr above me! the side effects aren't to be taken lightly, but it depends how you're feeling at the moment, is it worth it? Everyone has different experiences with zoladex but some of mine were due to being young. The hot flushes weren't nice and came in waves, like I'd get one on top of another and another, but then I wouldn't get one for a couple hours. I had a few cold sweats but not many. I did put on a bit of weight but it came off once they'd finished. I was given hrt in my 2nd month to help the flushes but this made me ill and my mum was diagnosed with breast cancer so I had to stop it as there are risks of b. Cancer with hrt! I got used to the flushes, so did my friends who eventually stopped telling me I looked like a beetroot!!! After the 4th injection i started being violently sick every fortnight (very strange when it happened, I'd have the injection on the Tuesday then the following Wednesday I'd be sick without much warning!) I later found out this was a calcium deficiency which is a rare side effect that my dr didn't pick up! So I would recommend supplements if you do choose it! One thing I would mention though is that I had one of my courses without having taken the pill for a long time, all others I'd come straight off the pill onto zoladex, and I did bleed heavily part of the way into the course. I ended up in a and e, and they said that a "bleeding event" is rare but can happen! Scared me lots!
I really wouldn't recommend the mirena at your age, unless you've had a baby! The first one I had I got contractions after it was put in (I'd had it put in during major surgery so could have done without the contractions lol!). My consultant first mentioned it when I was your age but I thought it sounded pretty horrific so wouldn't let them do it!
Just want to say this:
When I was diagnosed I thought it was the worst thing that could have happened to me...I was quite shy and didn't talk about periods or anything, then all of a sudden that was all everyone spoke about!!! I honestly would have preferred cancer at that point (drastic I know!) where I thought, you get that, they treat it and you either die or make a recovery!! It sounded better to me than this embarrassing condition that seemed to do what it likes! I was told to go on the endo society forum, but that wasn't for me....I'm glad I didn't now because it can be quite negative and scary and wouldn't have done me any good at the time. I was determined to have a career and decided to ask for a hysterectomy at age 16! Needless to say my consultant wouldn't do it, but promised to put me on the list when I was 30 just to keep me happy...I'm 33 and still haven't had one btw! I've had lots of laparoscopies, one major surgery, several zoladex courses, 2 mirenas...the list goes on! I managed to have a career though. I got my a levels in chemistry biology and physics, did a chemistry with medicinal chem degree and achieved a 2:1, then went to one of the best unis in the country/world to do a PhD in medicine (so got my Dr title lol). I want you to know that you can still do anything with endo...will it be easy? No! But it is possible! Hope it helps you a bit, hope you get some support and treatment soon!xxx
Thank you so much for even replying to my question, you have no idea how grateful I am for you response. I was told this week "Endometriosis is a bread and butter condition" where as we all no, thats a lie. I am grateful we have this forum as its nice to know we arent alone, but we shouldnt be going through this. I just wish we had some magic pill to cure it all.
Thank you again for responding, and my heart goes out to you. Its not fair but we need to fight this and be strong xxx
Hi, I am so sorry to here that you are struggling, I can remember how hard it is, I took a year out of uni as I struggled to attend lectures due to the pain. I tried 3 contraceptive too which either left me in a depressive mood or didn't stop my bleeding. I am 21 and had a mirena coil inserted 6 months ago. After 2 months of my body adjusting (spotting and cramps) I now have no bleeding or periods and I am feeling a lot better in general!
I also found changing my diet helped enormously!! I always had a healthy diet but being aware of which foods are anti-inflammatory and including them in my meals as much as I can has been so useful and I would definitely recommend it. It's crazy how much food can help, I was surprised! The Low Histamine Chef is a blog written by Yasmina Ykelenstam posts a lot of useful information regarding diet and endo, I've learnt so much through it!
My last point would be to ensure there are no other problems. For a long time I thought my pain was all due to the endo...recently my back pain has returned and I was confused as without periods I thought my endo was under control. After seeing my consultant he assured me it wasn't that and so now I am undergoing tests for my kidneys and bladder. The other problem I faced was that I was severely deficient in vitamin D, that meant any inflammation I had was continuing to get worse which meant more pain! So boosting my vit d and eating anti-inflammatory foods helped a lot! It is also important to give your body time to adjust, for example it took 6months for my inflammation to settle after my first lap in 2014, because it was quite severe, before I started to feel better.
It takes a while but hopefully soon you'll find a method of treatment that suits you! Good luck!
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