Pip for endometriosis and pain

[nikkimatt2019]

I've filled my pip form out and they have received it today. They have said I need to meet them when they give me a date but I'm gonna see if they can do home visit due to in pain. Im more concerned and worried that they may decline me again 😣😭. What happens if they dont understand this? What happens if they dont take this serious? My endometriosis is bad as it is and the pain also.

[Jensenelly]

Hi I’ve just had mine back and it was a no after loosing jobs due to time off I then worked for myself but lost clients because of having to cancel when I had flair ups! I’m 46 and have been suffering since 13! With pcos Endo and adomyosis they said I’m ok I have control of bowel and bladder (not always) but I say I have no control of bleeding let alone the pain! Good luck I’ve made a appeal first stages so fingers crossed for us both 😬

[Ergena-786 in reply to Jensenelly]

Oh that just send me shivers down my spine. I’ve suffered from all you’ve mentioned and fibroids for 20+ years, stugeled in pregnancies , strugled with work, day to day life pretty much hell, I got no help from anywhere, even my own go, came to a point where they were saying all the pain was in my head, that I was making something out of nothing, until collapsed few times, that they took my serious, anyway fast forward. I’ve just had my hysterectomy at the age of nearly 42yrs. I’m on the recovery, 4th week post opp. Not sure if I made the right choice, but considering that tried everything else and nothing worked, and where my health was deteriorating very fast. My biopsy also came back clear, I’m over the moon, also jn hope that will lead a normal life from now on.

[Jensenelly in reply to Ergena-786]

Fingers crossed I’ve just started HRT patches I was hoping for hysterectomy then lockdown happened I had a what I call my episodes and was taken in to a&e where like every time I was moved to the women’s centre I feel sine then they have offered everything but and now say a hysterectomy doesn’t get rid of the Endo cause I have some on my bowel? So this is 4th month on patches not much change... I was kind of expecting a miracle to be honest but I’ve not had an episode which is what I’m most scared of the heavy bleeding and pain I’ve been dealing with 30 years! I’m 46 btw. There’s been a lot on tv about Endo and again on news today ,I think the people making decisions need more education because my gp didn’t have a clue for years so how can someone that only reads a few words about us with out meeting me (she called me) make such a massive decision that will effect my whole life? 😘

[Tillyfloss]

Hi. PIP is a challenge and in my experience completely unfit for its purpose which is to help people. . I have endometriosis but I was also born partially sighted which impacts on daily life and I am registered disabled and I was getting DLA but had to be reviewed when it went over to PIP.

They did the appointment at there suggestion to make it easier for me apparently, at my home and then highlighted my ability to confidently move around the space and locate the paperwork they asked to see ( it wasn’t mentioned previously that it would be needed ) but as I could get it straight away because I’m organised it was also highlighted that I knew where things were and clearly I don’t struggle. I also had someone with me as I wasn’t comfortable having a stranger in the house on my own ( I was also pregnant at the time) and even this was highlighted at me having a good support network of people to help me. They completely missed the point that we had made our home a place I can move around in safely and being organised makes life easier for us regarding paperwork etc. If I had gone to them they would have seen a very different person as I’m very cautious in new place with steps etc and struggle to negotiate a new space until I learn the layout.

They weren’t really interested I struggle to see to safely cross the road and I can’t see the bus coming to stop it some days they just said I had a buss stop across the road ( a very busy road) and that was it the support was stopped even though my condition was worse ( it deteriorates with age) when I originally applied for support when I was 18. We had planned to appeal but I ended up poorly with the pregnancy and missed the very small window to do so.

If I was applying for endometriosis I would be brutally honest, when my pain was as bad as you are describing I couldn’t even talk in some of hospital appointments the pain was that bad but I am terrible at putting a brave face on it but for something like PIP they need to see it at the worst so if you have to go to them and you need to crawl up the stairs or you are bleeding so heavily you are going to be sick they need to see that to understand it.

Completely off subject have you seen a pain clinic to help try to manage the pain? Xx

[Jensenelly in reply to Tillyfloss]

Apart from I have full sight I tic all your boxes I sometimes sleep on puppy pads because I can’t change the bed every time I’m heavy and am in far to much pain to even think about it! Which happens at least 2-4 times a night when bleeding! And oh I don’t need to tell you but someone needs to tell them they have it so wrong yes today I’m coherent and can walk and speak but when And I say when cause I never know when it might happen I can’t stand with the crippling pain or sit! I can’t talk my boyfriend says I groan like a wild animal with the pain, I have to lay in the dark the low iron makes me sleep 23 hours a day apart from waking up with the pain and shivers hot and cold sweats.!!! But that they will never see so they see me today I’m like this fine that’s what they think?? So how can it change hope your ok

[Tillyfloss in reply to Jensenelly]

Endometriosis is the silent disease that so many of us suffer with for years and we are expected to quietly live with it🙁🙁.

Are you waiting for surgery or any type of treatment? I know exactly how you mean I could be fine and then passed out on the bathroom floor with minutes.

For the PIP don’t hold back on how bad the bad days are, I had to stop working with mine as most of the month I couldn’t get out of bed it was so bad. I wouldn’t have thought about puppy pads that’s one to remember.

Having had surgery for the endometriosis and having the baby they said wouldn’t be possible, I had flare ups after each covid vaccine and I’m very food sensitive and if I can’t resist chocolate cake I can have a bit of pain but nothing like it was previously.

for the sight I’ve never known any different it’s just a bit harder without the additional support.

Xx

[Heloo85]

I get PIP for Endo, but have a list as long as my arm, of other diagnoses! Although Endo is the main reason.. But I guess the long list of other health conditions prove I’m not healthy!

I’ve had sepsis (Endo related), I’m susceptible to infection, and then severe reactions when I get infections!

I’ve had more antibiotics in my life, than probably all the healthy population together.

I have asthma.

I have chronic (daily) pain.

Severe bowel issues! Had 40 impactions at the very least.

Chronically underweight.

I have some very strange allergies.

I show classical signs of systemic illness although undiagnosed! But my inflammatory markers are high, and I burst out at the knuckles.

I have drug allergies.

I can’t have pain relief for various reasons.

How much any of this plays a part in my case to obtain Limited Capabilities + PIP I don’t know! It’s only recently my GP has explained to me that I’m a supposed ‘complex’ patient that no one wants to treat! I don’t know what they say to the assessors! Before my first ever surgery for Endometriosis I was refused ESA for it (while waiting for surgery). The severity of my diseased state was not known until surgery!

You can try, they can only say no! My sister in law is trying for a singular, chronic spinal disease! But I don’t know! If you’re assumed healthy, then they assume your symptoms can be managed without causing any further damage!

I’m in the middle of another review, yet to hear if it’s been reawarded or if I’ve been signed off, but anything DWP is scary! Xx

[Bethleah]

Contact citizens advice for free help. Also have someone with you.