Why am I having all these issues - Endometriosis UK

Endometriosis UK

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Why am I having all these issues

MelissaHewitt87 profile image

So I’ve only had one decapeptyl jab not taking hrt really don’t wanna my blood tests wasn’t normal back in February doctors had me doing various blood tests and today said they think I’ve got Osteo arthritis referring me to rheumatology like what is this life? I’m 34

I could cope with the fact I’ve got a cyst now I’m wondering are these injections doing this but my bloods was off in January before the jabs my heads a mess i feel like im getting ready for my coffin

It seems life really does go to s*it when you hit your 30s

33 Replies

I am in my 30s and my life went downhill medically from 35+, it’s a drain ain’t it and you feel older some days that what you actually are. I took 6 monthly injections of decepeptyl and decided no more x

What’s happening with you now? I’ve got my second injection at the end of the month …. But I don’t know feel like an old woman

Came off the injection as it was bloating me up, mentally not in a good place with it and decided to come off of it x

Are you waiting surgery? See I’ve just had this all plonked on my I’m 34 got a 10cm cyst may be 6 - 12 month before operation and until then I need these jabs but I don’t want them long term as I don’t want bone density but don’t want hrt …

But now suddenly suspected Osteo arthritis don’t make sense

I had 2 decapeptyl injections and no more. I'm 43 and life is unbearable. I'm bloated like the marshmallow man and fatigued nauseous migraines dizziness everyday, they don't work. Just had my blood tests done and apparently my good cholesterol is not good and my cortisol is bad I'm in constant fight or flight mode. I'm on b12 shots now so I would say you're not alone and come off them. You know your own body and don't be afraid to say no to something that makes you worse. I feel like I'm 90 somedays because of that stupid treatment

Thank you for your reply I’m 34 only had one don’t feel much difference … a few hot flushes second one due 28th I’m just worried over cyst getting bigger but can’t be bothered for feeling worse so I’m in two minds doomed if you do doomed if you don’t , is that something that normally happens having to have b12 etc or is that for other conditions?

Sorry to hear of your experience

I know at night time I get sharp pains in my head which sets off anxiety but it only happens at night never is day and sharp pains in my arm but being referred to rheumatology for that

I'm longtime coeliac with an underactive Thyroid with recently diagnosed stage 4 endometriosis thankfully my GP is a good one and has my Thyroid under control on ndt. So the b12 is just something he's trying to see if it will help my fatigue and as in my recent bloods my cortisol is showing I'm in fight or flight mode to the point its my default setting. This wasn't my first time on decapeptyl injections I was on them right after my one and only laparscopy and my then GP didn't know what to do about Thyroid. I didn't have a good response on decapeptyl then either but I had no clue about anything then. Knowing what I do now I wish I never heard of these injections and as bad as it is better the devil you know is now my motto. I since found my new GP and am now on my 3rd gynaecologist so I would say we know our own body and get multiple opinions until you feel better, good luck

God you sound like you’re going through a lot I don’t even know what half of those are only the thyroid one…. I think I’m gonna go for second injection even though I don’t want to but terrified of the cyst getting any bigger

It’s almost since four week since my first one I’ve been abit achey and I couldn’t move wrist other day and docs said tendinitis then said Osteo arthritis I’ve no idea why or how I’ve had hot flushes then I feel cold

I’m dreading the second jab I really don’t wanna take hrt but I feel like no one’s listening to me as far as docs and nurses are involved but I’ve bought some stuff Holland and barrett

Sorry if I’ve repeated myself my heads a mess at moment I just want to be how I was before I’m not in pain so I’m kinda thinking I don’t have endo but what do I know …. All I know is I’ll prob have a long wait before surgery and that sucks cause I can’t be bothered for my hormones allover it’s such an headache

God trying to write this post without swearing proved difficult

You poor thing my heart is broken for you. Hearing your symptoms i now know that this is the decapeptyl injections and if you read the leaflet that comes with it you will understand more. I was like you and said I would go through it to show that I did try it and the side effects of it the last time were so bad had completely swollen legs and ankles. Constant headache dizziness and nausea. Like you I'll be waiting a long time for a new surgery but the injections are something I wouldn't wish for anyone. I wish you luck

Hearing your story is putting me off but I’m a very anxious person so that doesn’t help me…

I mean they said I’m getting them to try shrink and stop growth I’ve got a mri next month so I guess that’ll show if anything has changed or not…

I’m already overweight not massively so I really don’t wanna put on more weight and so far I haven’t but for the aches and pains it all come so sudden and everyone said you’re getting old but I’ve read side effects and I’ve a few symptoms not many but may be more so with second one …. I don’t know what to do I’ll maybe try it even though deep down I don’t want to

I thanked mum and dad for bringing me into the world and asked if I could go back now 😂 honestly I don’t even know anymore …

If I feel worse I’ll not be having any just hope that my body will go back to normal I honestly really don’t want hrt I’m terrified of the consequences even though it’s only so many out of however many people for me with bad anxiety I can’t do it…

I really hope you get sorted out , I notice sharp pains in side of the head come and go in pretty sure it’s them injections it sets my anxiety overload.

I feel for you going through all that and the way you feel I wanna call em every name under the sun , what will be will be I guess 😣 xx

I was told it would help me by stopping further growth of endometriosis and ease pain. I'm still in pain and the side effects are horrible. Guess I'm not one of the lucky ones. The MRI will reveal more but whatever they say don't be afraid to speak up for yourself

Don’t worry about that sometimes I’m too outspoken for my own good and lands me in trouble….

I just know that they are all so stuck up I said I was gonna ask for a change of hospital but found out the other hospital here doesn’t have a gyno clinic typical!!

I know family and that are like do as you’re told continue with treatment but end of the day they aren’t living in you abs it’s your body.

I don’t even know if mines endo if I’m honest they say they don’t know either …. Worse pain I had was during period and obviously a number two on toilet and wiping I get abit of pain to right of stomach but other than that it’s been fine it’s just the other aches and pains I can’t cope with

Now I’m waiting referral to rheumatology saying Osteo arthritis but it’s probably just these jabs

I got a few things up and down on my bloods but don’t really understand any of them and when I tell them what’s this that and other they’re like your not a doctor stop trying to do a doctors job…. Attitude ! Xx

Oh hon. I wish I could hug you. You don't have arthritis it sounds like endometriosis.

Do you have health insurance? O went private and managed to get some answers but I'm still getting other opinions. They are only willing to do decapeptyl injections here in Ireland. There aren't many hospitals and they have no clue about endometriosis. I don't even see my family anymore, they think I'm too OTT and 'live in my head ' so they don't bother with me anymore and my youngest sister is actually a ED consultant! I'm always here if you need a friend.

Thank you I appreciate this and as for your family that’s disgusting of them they should’ve supported you!

But with sounds of it you’re better off without them I’m in UK in Sheffield so I’m under nhs and I’m a full time unpaid carer for my girlfriend so going private isn’t even really an option right now for me I wish it was cause I’d be on it straight away…

I mean I just assumed it probably isn’t endo cause everyone seems to be in pain during sex and well I don’t feel any pain at all during that…

To be fair my pain isn’t half as bad as it was but these acheyness feelings get me down but I’m gonna start going walking and stuff cause if I’m not taking hrt I need to keep em strong and tbh I could do with losing the weight..

Same goes for you I’m here if you need a friend or a vent or whatever 😊 xx

I am a qualified homecare assistant/carer and can't do it anymore as I can't do shift work due to the fatigue and pain so got an office job and I'm struggling in that too. The other problem with decapeptyl injections is the weight gain and bloating so bear that in mind too.

I went private as I can't wait 10years for the public health waiting list and I'm still trying to get answers.

I have found that walking is the only thing I can do to exercise and keep my head clear so when you can do it but lots of warm baths help too.

God I know it effects everyone differently and I’m normally unlucky so I expect the worse wish I didn’t but can’t stop the mind playing games …

I’m not qualified or anything but she has bad bad mental health I know how to deal with it and it’s not nice for her nor me but I do my best and that’s all I can do.

I only wish I could go private maybe one day if I win the lottery but I don’t play it so I’m not gonna win it 😂🤣 only other thing I’ve noticed is my urine smells weird can’t even explain the smell …

I bought some walking boots so I’m gonna try and keep on my legs as much as poss I can’t be doing with being bed bound or anything I’m so depressed like that …

Oh the urine thing I have that all the time. Foul smell constantly needing to pee and discharge and yeast infection

AwfulInit well I had my second jab today was 3mg I told them I don’t want hrt and was saying go get it anyway I went no thanks also said I’m not having more than 6 month worth of jabs and depending how I feel may not have all 6 months worth , had my mri pulled forward to 18th nov and consultant appointment 25th November ….. see how I go

Hope you're OK after the injection

So far I don’t feel any different but to be honest it took about two weeks last time before any symptoms happened.

Had my mri pulled forward got that on 18th nov and then consultant appointment 25th nov

Told them I’m not expecting to have these more than 6 month and I may not do that if I get bad effects from it declined hrt again wasn’t happy with me but I boug Jr some stuff from Holland and Barrett.

Hope you’re keeping well lovely xxx

Hey hun,

I live in Ireland too. How are you managing?

How did you get on decapeptyl? Did you have HRT as well? I'm on my third injection but feeling awful.

Oh yay another Irish person I'm so happy to know you. I finally got a new referral to another gynaecologist Dec 8th and €200 so I hope its a good result. Sorry not replied before but I've had a crap few weeks at work which hasn't helped my endometriosis.

I didn't bother with the 3rd injection as I reacted so badly from the first 2. I will never have those injections again as life was manageable before but intolerable since having them. I wrote to my local politician as its hard to keep working when work just doesn't get it and there's nothing to provide for endometriosis in Ireland. I hope you're ok

Heyup I’ve also had my third jab I don’t feel awful to be honest but have pain in my wrist still not taking hrt and told them I will only have 6 month worth of these injections then I’m stopping them ,Found out my 10 cm cyst is attached to my bowel and uterus so that’s just great depressed as F***

Lmao I thought you was talking to me feel about idiot ignore me 😂😂

Hi thanks for your replyI definitely do feel like an old woman …. I get my second one on 28th I’m literally only having is cause they said hopefully it’ll stop growth of my cyst and possibly shrink it but if I start to feel bad I won’t be bothering just don’t want the cyst to get any bigger with it already being big heads a mess im sorry to hear you’ve gone through all that xxx

Hi MelissaHewitt87, sorry to hear ur feeling this way, can i ask why u dont want to take HRT? I've been on decapeptyl injections monthly for over 17 months now, I didnt see the point to start with but after 3months I started to see they were helped with my pains and has helped reduce the growth of my cysts, I'm also HRT and I've had a bone density test (all good so far 🤞) the hot flushes can still be a bit if a killer, but I would take that over the pains 😉 it does have its side effects (hair loss, weight gain etc.) I had an appointment yesterday where I did hope to come off the injections but my specialist has advised against this cos they wouldnt be able to manage my pain, fingers crossed I'll be having surgery early next year. (I'm 39) I just thought hearing others experiences might help u and for u to know ur not alone, good luck with whatever u decide xx

Hi To be honest everything was rushed with me they didn’t really explain my options basically said if I don’t have injection my cyst would grow more , it’s 10 cm I’ve had one injection second one 28th October I read that these injections shouldn’t be given longer than 6 month as it does cause bone density ….

My reason for not wanting to take hrt is cause I know it can increase risk of cancer … I’m already an anxious mess I don’t need what ifs and to be honest they just didn’t go into detail about it all…

I’ve got mri in November to see if my cyst is attached to my bowel …. Follow up appointment in November too but follow up is before my mri …. To be honest my heads just allover the place and I know of someone who was on hrt and she did develop cancer and I just can’t do it I’m already a mess

Thank you for kind words

I totally understand u need to what's best for u, maybe u could ask for a phone consultation so u can go over ur opinions before ur next injection, I think there are natural ways of trying to help with menopause symptoms but I'm not sure, might be something to look into to help u while on the injections, hopefully it will just be for a short time, u are right they say only 6 months but an endo specialist can keep u on them longer, good luck xx

You know I’ve tried various times to speak to consultant and I get the impression they don’t really care you must take hrt blah blah blah .. I got some stuff for bones from Holland and Barrett herbalist but you know there’s so much to take in abs very little info given to me from them.

The nurse was nasty as hell Infact they all seem abit stuck up on gyno clinic the nurses etc I have second injection next Thursday I’m in two minds but don’t want cyst to grow any bigger but they did say to me the jabs aren’t guaranteed to help so as soon as I get that mri I’ll be asking if it’s made a difference…..

I know what u mean! Some of the speak to u like ur a child 🤨 I take calcium, vit D and omega 3 fish oil, this is what the endo nurse said to take while on the injection and HRT. Have u tried the pill or implant? X

I was on pill years ago but I’m with a woman so I don’t need any of that 😂

😂 well this can help with endo too, I think the mini pill is ment to be the better one to try, this might be worth talking to ur gp or gyne about if u decide not to carry on with the injections, I was on these but even they didnt help in the end so the decapeptyl was the only thing left to try xx

Are you meaning like the actual pill? Cause I know when I was on it , it totally messed my hormones up and I was bleeding between periods etc . I’ll deffo mention it and thank you for that info I do appreciate it… I’m getting my next jab next Thursday x

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