Anybody else fed up of meds, prodding and... - Endometriosis UK

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Anybody else fed up of meds, prodding and poking....can you get through without all this???

gr8kids profile image
9 Replies

After years of all the prodding and poking and medication and surgery for endo and ovary pain. Plus been on fluoxetine for a year for anxiety and it has helped me but now been told i need a higher dose of sertraline. I had to have a 3 day break before starting the sertraline. Those 3 days i thought would be tough but they were ok and then on the day i had to start new meds i felt like a zombie again. With the thought of having to go through prostap and HRT in January, with horrendous side effects then with the thought of a hysterectomy after. Sod the meds and all. I'm fed up. It's now been a week without fluoxetine and I'm more awake then ever. Yes I have still had pain but have gotten through this with pain pills, heat pad. I know my pain will get worse as it does when I'm ovulating and menstruating. If there are other people out there that can get through this without all the harsh medication then surely so can i right.!! Just trying to find another way forward.....

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minime1 profile image
minime1

Hey, i understand completely. I have been a year without any treatment, i have been on a repeat prescription of co-codamol which has helped through the rough times. I would say that every other period i have spent the first day laid up as bad was not bearable but the other times i have manged to muddle through. On the other hand i am now booked in for another lap in January as the prostap didnt work for me (i had for 9 months in 2011) we all suffer with this and it would be amazing to find a happy medium x x x x

gr8kids profile image
gr8kids

I know that I can't be sure what will happen with me when I go on prostap but I have a feeling that it will make a difference with me and that will lead me to have the hysterectomy. I've had all I can but all have helped me on a short term basis. My mum had a hysterectomy, my aunts and sisters have problems. Its clearly through my family. I'm just not prepared to go on prostap for more side effects. So I'm going to give my body this break and see how well I get on. Hopefully I can put off anymore hard medication and surgery till I'm closer to menopause. When I'm hoping it happens naturally then it will calm all my symptoms down. Lets hope I get it right as I'm 37 now so few years left yet hey. But I'm desperate to try another approach that doesn't involve hard drugs and surgery.

minime1 profile image
minime1

Have you tried following the endo diet? A lot of people have been able to manage their symptoms by changing what they eat, ( i followed it but i love my food so much it didnt work).

gr8kids profile image
gr8kids

I have but without even knowing it because as others I have also been diagnosed with IBS so had to cut out of alot of different things and then they thought I was gluten intolerant. So once again I cut out other things. So when I saw there was an endo diet I thought it would be good idea to give it a go till I saw it's how I eat anyways. But you right I think with the correct diet and taking it day by day I could at least give it a go at doing this.

Hannah77 profile image
Hannah77

Have you tried homeopathy?

crystal_willow profile image
crystal_willow

Its early days for me in terms of diagnosis, I am 28 and have had suspected endo since I was 18 but only got diagnosed at 27.... I am on no treatment other than naproxen and paracetamol when I am on my period and my anxiety I treat with well researched self help techniques and counselling... feel free to message me about anxiety if you want info about what I do to self-manage my anxiety.

I had a treatment and diagnostic lap last year.

My endo growth was mild last year but the pain is high. When I don't use meds I feel like I am about to be sick with the pain and can't concentrate due to this.

When I use naproxen and paracetamol effectively I have essentially no pain but instead I just get "jelly legs" on my worst day. But this is only if I use my meds properly as I am learning to do.

The pros to this are that I have less invasive treatments and less side effects and feel more in control of my body.

The drawbacks are that my endo will continue to grow at its natural rate which is scary for me to think about

for me this seems to work and my gynae did not argue with my chosen approach (I assume it saves the NHS money lol).

I am sure I will need another lap in years to come but I figure people on hormones seem to need this too and my mum has the same condition and she seems to get along mostly fine without hormones and she is in her 50's and has started the menopause.

I am hoping that since I got her endo genes that I will have her resilience too... :)

memyselfi profile image
memyselfi

Thoroughly fed up here too and having the same thoughts as you.

I think sometimes it isn't just your body that needs a break, but your mind too? Maybe ask to postpone the prostap etc until the spring when treatment might feel a bit easier to bear, January is such a depressing month.

I don't think it is about some people coping with pain better than others though, you can't really ever know how much pain someone else has. Also, there are so many different types of pain, some you get used to and some you don't.

I want to see how well I can manage with just painkillers for a bit and that will give me a chance to research other options and make a more informed decision about my future treatment than I am able to make at the moment.

Mind you, I'll probably say something completely different when I'm on the first day of my next period!

gr8kids profile image
gr8kids

Well Im sat here now and my ovaries are hurting alot as Im due on in a few week. At the moment i really don't even want to consider having prostap but i would consider having another lap with the hope that consultant could see something and treat it for some short term relief. Not sure if i could maybe request this? The last lap was done just short of 3 years ago just after my endo ablation., the lap came back clear. Oh who knows hey., i don't know what to do anymore x

I've been having similar thoughts.....can I manage my endo without all the meds etc? I'm determined to try with just diet, exercise and the odd painkiller before I even consider anything else.

I've suffered with anxiety for 10 years and was put on citalopram, I decided to come off it last year and actually feel much better and more 'normal' for it. I still suffer from anxiety but I've realised the best way to deal with it is exercise and therapy/CBT. To be honest the citalopram has seriously put me off medication! x

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