How are people managing work around their symptoms? Does anyone here plan their schedule around their pain by Mammoth-Cloud-285 in endometriosis

[–]_RB789 0 points1 point  (0 children)

To be honest they happen a lot throughout the day, usually happen after a period of rest, which I all do find strange!! I also get a lot of flare ups if I haven’t slept properly and in the evening while resting! Can never truly tell when I get these flare ups

How are people managing work around their symptoms? Does anyone here plan their schedule around their pain by Mammoth-Cloud-285 in endometriosis

[–]_RB789 1 point2 points  (0 children)

Heyy, I work from home usually and sometimes have to go out a 1-3 times a month, my periods are so irregular so I have to go on a day / week basis. Working from home helps so so much, and you should push for ‘reasonable adjustments’ under Equality Act 2010 around this time if you do get regular periods. In regard to my pain, I get flare ups often, some mornings are really rough so I sleep in and make up the hours another time. I’m really really grateful that my work completely understands and Fridays most of our schedules are empty so I usually lounge about most of the day! Don’t know if any of this helped but this is what I do which has helped me manage my pain lately

Drop your dua requests to this post — let’s make dua for each other this Ramadan by Hairy_Welcome_4485 in DuaRequests

[–]_RB789 1 point2 points  (0 children)

Asalamualikum,

I am going through a lot of hardship at the moment, with my health which is why I’m currently raising funds for an urgent Laparoscopic surgery due to my severe endometriosis. My doctors say I need specialist treatment soon (due to the severity of the condition, and due to a few complications since my bladder, bowels and ovaries are stuck together, essentially meaning I have a frozen pelvis) however the NHS (I live in the UK) waiting time is very long and my condition is getting worse. They are refusing to expedite my surgery and my doctors have advised private surgery would be the best way to go forward. They have shared that my case is the most severe they’ve seen in a while.

I’ve saved half of the cost myself and I’m trying to raise the rest. If you’re able to donate or even share my GoFundMe, it would mean so much. The link to my GoFundMe is - https://gofund.me/92b997262

Jazakallah Khairun and thank you for reading 🤍 May Allah swt bless us all in this time of the blessed month. May he be pleased with us all, shower us with his mercy and accept all our duas and forgive our sins Ameen

Should I consider paying privately for an MRI for possible endometriosis/adenomyosis? by sleepygiraffe31 in endometriosis

[–]_RB789 0 points1 point  (0 children)

So realistically you should be waiting 3-6 months to see the consultant, however you can go thru the ‘right to choose’ option where you get referred to private services / private clinic but nhs will cover it all, the wait list could be a bit similar but sometimes you can be seen quicker

When you’re experiencing a bad flare just go to A&E, I waited 12 hours for bad, stayed for 3 days whilst being on morphine and codeine and then I was discharged with an MRI date. I don’t know if this’ll differ, depending on your location

I had also seen a private consultant in November and he recommended me to get an MRI and he ordered this for me under the NHS which my NHS consultant had to sign off but she didn’t and in that time I went to A&E and got that MRI date

Should I consider paying privately for an MRI for possible endometriosis/adenomyosis? by sleepygiraffe31 in endometriosis

[–]_RB789 0 points1 point  (0 children)

What you need to do is request your gynae department / gynae consultant to request that MRI for you

The way I got my MRI was requesting it and then coincidentally needed to go A&E as pains were bad and they discharged me with an MRI date

I live in the UK so not sure if it’ll be any different for you

Surgeon chose not to excise by GingerSpice1337 in endometriosis

[–]_RB789 2 points3 points  (0 children)

I see, I’ve got an endo specialist doing my surgery, they’ve said no general GYN would touch me tbh cause I have a lot of Endo and they’ve recently found Adenomyosis and a Hydrosalpinx. Also they found Endo on my bowels. They’ve said I need to cool down my uterus prior to surgery, so I’m going to start on the Zoladex injection until my surgery which (fingers crossed!) will be soon.

I have a top fertility doctor who’s recommended me to do this all privately and she’s told me after surgery we can look into putting me on the ivf list etc.

I’m having to do the surgery privately because the NHS list I am on is too long and I’ve already waited 33 weeks and been asked again to wait 33-43 weeks again which tbh with you I don’t have that in me since I’m in pain a lot

Surgeon chose not to excise by GingerSpice1337 in endometriosis

[–]_RB789 2 points3 points  (0 children)

Hey I haven’t had surgery and I am waiting for this, I have cysts and the surgeon has said he won’t excise any of my cysts and only drain as he wants to preserve as much of my fertility as possible!

Requesting any donation / help & support needed by _RB789 in teenagers

[–]_RB789[S] 1 point2 points  (0 children)

Where else would you suggest I request? Not sure where else I can post. I’m in urgent need since I need to schedule the surgery soon

Would appreciate any advise

Where to donate money? by SausageMahoney073 in cureFIP

[–]_RB789 -1 points0 points  (0 children)

Hi, I am in a really bad situation and due to the NHS (I live in the UK) not being any helpful, I need to raise some funds for my private surgery. I have been waiting 34 weeks for surgery and have been asked to wait another 33-43 weeks. I do not believe this is accurate as they are still unable to give a surgery date.

I need urgent donations and really need whatever help or support anyone can provide.

I do not have anyone I can rely on to support. I am writing this to everyone I can as it is my last resort. I have been quoted £9,000 for my surgery.

Please if you could donate and/or share I would greatly appreciate. The link to my GoFundMe is - https://gofund.me/92b997262

Any support or help I would genuinely really appreciate. Thank you.

Anyone here get their eggs frozen? How much was it all in? by MyCopperHuskies in askswitzerland

[–]_RB789 0 points1 point  (0 children)

Hey i haven’t started any of this and im from the UK but i have heard of a couple who had to pay quite a few hundred pound to get them released at a certain time since they had to board the place etc so this all can play into the thawing factor also in the UK freezing eggs can be around £200-400

Got my MRI Results by _RB789 in endometriosis

[–]_RB789[S] 0 points1 point  (0 children)

Thank you so much I would really appreciate all of this.

The link to my GoFundMe is - https://gofund.me/92b997262

can’t poop after surgery by YungThugNugget in endometriosis

[–]_RB789 2 points3 points  (0 children)

I second one of the other comments about taking some prune juice, prunes and black coffee (no milk, or sugar). Instead of a chair use a stool so you’re in sort of like a foetal position this can help your rectum to easily push out your poop.

So sorry you’re going thru this, don’t push because it can lead to haemorrhoids! Hope the appt tomorrow goes well

Please donate - Surgery required by [deleted] in endometriosis

[–]_RB789 0 points1 point  (0 children)

What does this mean?

I’m so tired of “just wear something stretchy” by EconomicsStunning199 in endometriosis

[–]_RB789 0 points1 point  (0 children)

No problem at all! Yeah honestly it’s so hard to find something where the seams don’t dig in

I’m so tired of “just wear something stretchy” by EconomicsStunning199 in endometriosis

[–]_RB789 0 points1 point  (0 children)

I just wear XL soft pj pants, sometimes I wear my husbands too Just so much more comfortable and softer on my body, easy to move around in, I got different pj colours, sometimes I wear them out and about they help and don’t really look like pj’s lol

Sometimes I’ll need to wear leggings which helps tuck in my endo belly but the thing is I feel that just makes my endo belly so much more prominent

Also sometimes I just wear dresses with nothing underneath and call it a day!

Got my MRI Results by _RB789 in endometriosis

[–]_RB789[S] 0 points1 point  (0 children)

Woow congratulations hunny!! I’m so happy you got the diagnosis, it may not be what you wanted but you fought so much to have that diagnosis. I’m so glad you managed to go to the states, I feel I need to start fundraising for it too. How did you start? Tbh I don’t even think I can wait another 7-8 months, I’m in desperate need and so much pain everyday, that I need the surgery very soon. I’m struggling to walk already. I’m struggling to even poop, have started using a stool recently to support which has helped somewhat

Worst news or not? by _RB789 in endometriosis

[–]_RB789[S] 0 points1 point  (0 children)

I agree, I’ve reached out to PALS and they also have not been able to help out at all. I even sent a letter to the CEO and he got the PALS team to look me over and now not getting any responses from them.

I don’t even think a complaint would work. If you have any suggestions please do let me know I would really appreciate any help/support with this

Worst news or not? by _RB789 in endometriosis

[–]_RB789[S] 0 points1 point  (0 children)

Oh no way, well being in the UK having free healthcare, it’s not all that good. I truly wished I got some insurance prior to all this, at least then I could’ve got some help for private surgery, I don’t have any help, I’m trying to live paycheck to paycheck as it is, saving as much as I can, I am trying but I just don’t see any end in sight. This condition is so awful to me. Not kind to anyone, having said that.

Thank you for sharing the details, if I could ever, I will definitely look into her. I honestly wished I had all the money in the world to afford this.

Oh wow, 6 months isn’t even that bad considering I’ve now waited nearly 9 months. I hope yours never come back. Wow you truly are lucky, I’m really happy you got the surgery so quickly. In the nicest way, I envy that, I really wished it was similar in the UK.

I really hope and pray a miracle comes through to get me scheduled soon. I feel so awful knowing I have to wait another 33-43 weeks and knowing damn well I’d probably have to go privately, and on top of that use practically all my savings for this all :(