Am I alone with the pain and constantly u... - Endometriosis UK

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Am I alone with the pain and constantly unwell

Clairegavin77 profile image
16 Replies

Hi ladies so was kind of diagnosed with endometriosis back in 2014 just from a so called specialist doing a bit of poking and prodding and head nodding, I was given mini pill to take constantly which worked for a bit he also gave me transnamic acid even after telling him I had history of blood clots in my family, so I never took them, the endo died down for a while but in the last few months has come back a million times worse, I went to docs after suffering an awful dull nagging ache which feels like it's at neck of my cervix, I was given 2 weeks of strong antibiotics that gave me terrible diorhea for a suspected pelvic infection, the test results came back clear but after it all the dull aching pain is still there constantly, I just feel like curling into a ball constantly because it aches more when I stand which is hard to avoid when working shifts in a very busy factory so I have a physically demanding job as well but I'm struggling so bad I go to sleep tired I wake up tired and I mean it feels like I've been awake for a week, I feel naustious all the time like morning sickness nausea but permanent, I have diorhea all the time as well now and am also experiencing gastro problems pressure in stomach and back which I've now learned could be due to the endo even though being treated for suspected hiatal hernia??? And the worst part of all this is the feeling that I'm busting for a wee never ever goes away I can wee and the feeling I still need to go just stays and it's been like that since 2014 I've just learned to live with it but I'm now at the end of my tether I just don't no what to do anymore and feel like giving up, I've been referred to a different specialist by my gp to see if somebody else will help, please tell me I'm not alone :(

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16 Replies
Afrohair profile image
Afrohair

I feel like you do and I’ve only had it 6 month knowingly I had back pain previously but thought it was nothing.pains in vagine can’t stand long feel hungover I find stress aggravates the condition which I have been lately if it was me waiting that long for answers I would have at least got a consultant specialist private although I know not everyone has funds your health is at stake and it’s a progressive condition I’ve said I will take it as far as gynaecologist with some support on here and in that meeting I will ask for a referral to a specialist in my condition I’m trying to have a child this could affect my fertility I’ve been on the endo diet and I don’t know if it’s helping or if I’m that stressed it’s not working I hope you get sorted soon plenty of advice in this forum

Clairegavin77 profile image
Clairegavin77 in reply toAfrohair

Thanks afro hair, it's awful to say I'm glad I'm not alone but it helps to no im not alone, stress 100% effects the endo I have suffered with depression and anxiety for 20 years I was recently put on a different antidepressant after being on the same 1s for 15 years I hit a brick wall with them, I'm gradually feeling a bit better depression wise but when I'm having all this awful dull dragging feeling up inside (possibley the neck of cervix) at least that's where it feels like it just makes me feel so down and sad and like no doctor will ever understand or help me properly, all the best of luck with trying to conceive I was lucky I had my children before the endo but I no alot of women with endo do go on to have babies and I'm sure you will, I can't afford private care as we are struggling as it is and we just get by so it's a case of waiting on consultants when they can be bothered to turn up to the appointment that I've waited months for, that's why I'm waiting to be seen at a different hospital by different consultants I'm going to request a laparoscopy to see if that shows anything.

Afrohair profile image
Afrohair in reply toClairegavin77

The pain is awful sometimes I think I must be dying or there must be something else I’m using up some savings which is sad but I feel like if it comes to it I might not have a choice did the anti depressants help your endo at the time not sure if I should go down that route or self care

Clairegavin77 profile image
Clairegavin77 in reply toAfrohair

I'm sorry to here your having to use your savings it's so frustrating that you have to but I no where your coming from, I also feel alot of the time like there must be something else wrong due to all the symptoms and feel like I'm in my own little bubble screaming to get out and just feel well just for 1 day ( it would be nice ) I've been looked at for hiatal hernia because of constant tummy problems like pressure under ribcage, terrible acid reflux, bloating, my doc is now considering checking for fibromyalgia but I honestly think it's all connected to the endometriosis, I read an interesting article early which maybe of interest to you being in same boat, Google ( Sonia harris, killing time how endo almost destroyed my life) it gave me a glimmer of hope, have a read let me no what you think x

Afrohair profile image
Afrohair

They have also tried to tell me I have pid I know it’s endo

Clairegavin77 profile image
Clairegavin77 in reply toAfrohair

They just gave me 2 week course of 2 different antibiotics for pid, the swab results where clear and antibiotics just made me feel sick and had diarhea all that for nothing

Afrohair profile image
Afrohair in reply toClairegavin77

That’s what I’m going through now that’s what they give me last week 3 tabs a day then another 2 a day I’ve got one left and I’m not taking it I’ve been feeling terrible on them

Clairegavin77 profile image
Clairegavin77 in reply toAfrohair

Snap love exactly the same, I took last 1 this morning I've been off work today had so much to do at home but literally have zero energy I feel like I've run a marathon and then fallen down the stairs that's the only way I can describe it, I feel so sorry for my fiance because all I ever tell him is that I feel ill and so so tired I'm sure he's sick of hearing it it's like groundhog day.

Afrohair profile image
Afrohair in reply toClairegavin77

Me too my partner is getting sick of it too it’s like I’m moaning all the time I’m supposed to be planning my wedding but just can’t see it when I can’t even wiggle a hip most days

Clairegavin77 profile image
Clairegavin77 in reply toAfrohair

Aww bless you, you sound exactly like me, well their still with us so that says something lol, I've never had a lap but I'm going to request 1 when I see this new specialist when I get the appointment and I say when because I always wait ages then always come away feeling none the wiser, let's hope this new specialist is better, I too have my children with my ex husband, I tried with my fiance before and after the endo but to no avail but he also had issues due to the fact that he used steroids as a youngster we ended up with a dog instead because we tried for 5 years and every month it didn't happen id end up heart broken so it wasn't helping with my depression x

Afrohair profile image
Afrohair in reply toClairegavin77

I just lost my baby 6 week ago and I keep thinking it’s that I really want a baby with him and we had our whole future planned I got engaged he went away for a month and while he was away I had unexplained pelvic pain we tried for a baby and I got pregnant but sadly lost it now the pains are getting worse I keep thinking my loss is down to endo and don’t know what to do he’s devastated about my research so far and it’s come as a shock to us I’m so scared he might leave me but he says he won’t but now I have trust issues

Clairegavin77 profile image
Clairegavin77 in reply toAfrohair

Aww babe I'm so sorry for your loss, let it bring you together rather than push you apart, if he really loves you then he will support you and stay by your side and if he doesn't then your worth more love, I'm here if you ever want to talk, stay strong x

Afrohair profile image
Afrohair in reply toClairegavin77

Thanks for your support

Clairegavin77 profile image
Clairegavin77 in reply toAfrohair

Your welcome sweetheart

Afrohair profile image
Afrohair in reply toClairegavin77

Have you ever had a lap and did you get pregnant with endo I do have children but with my ex

StefaniaJW profile image
StefaniaJW

I am begging you to book an appointment with one of the most skilled, well-trained and experienced endometriosis excision surgeons in the UK (I can provide a list of those working within the NHS or privately).

You cannot go on like this and need surgery, both for severe endometriosis (which has clearly invaded the bowel given the nausea and diarrhoea) and hernia.

Please, for your own good, PM me ASAP!

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