So much pain!

[PurplePaganSpirit]

Hi everyone, new here, just found this forum because I am really struggling with this whole thing right now and could do with some support from people who understand. Here is my story:

I've had 2 Caesarean Sections, the last one was 2 years ago. Since then I've had pain in the lower left side of my pelvis which at first I thought was just my scar healing up. However the last 10 months or so the pain has been getting gradually worse and worse so of course I went to the doctor. So far they have done X rays and ultrasounds - of which the only thing they found was a polyp at the bottom of my uterus. The pain was still increasing at a faster rate, and then I noticed that it hurts more when my bladder is full, but everything else in that department is fine. I finally saw a gynaecologist consultant 2 weeks ago and he is referring me for a laparoscopy due to the amount of pain I'm in but he said it's going to be 10-12 weeks. I haven't heard a thing since then, even though I rang his secretary on Monday asking for a call back as he said he was going to recommend different painkillers too but hasn't yet. Anyway, yesterday the pain took a severe turn for the worse and I also had symptoms of tight chest, trouble breathing, massively woozy and lightheaded and confused. It was bad enough that the paramedic came out to see me but no signs of infection and vital signs all good. So went back to doctor this morning as no better. Again nothing really found, but she could see how severe the pain was so she's upped my dosage of painkillers. Phones consultants secretary again 3 times today, no answer on any so left messages asking for a call back as pain so bad I need to know when my appointment is going to be. Nothing, so now I have to wait until monday. I'm just so fed up of this, I can't be a proper mum, I can't work properly and I'm in agony constantly but they won't even ring me back! I'm seriously considering getting credit to go private, I don't know how much longer I can cope with this 😥 what would you do?

I'm so sorry for the essay, and thank you so much if you've read all of this! Xxx

[Lou93]

Hi

I’m so sorry to hear your in so much pain I know the feeling😔 have you got the option to go private I had my first private appointment last night and he’s sending me for a mri and lap booked in april it’s seems to be much quicker.

Maybe if you try to have a consultation with someone through the private route and see if they are a specialist in that area I’ve seen people say you can always ask to be referred back to the nhs once you’ve seen someone??

Did the paramedic say if it gets much worse to go a and e? Xx

[PurplePaganSpirit in reply to Lou93]

Thank you so much for replying, I'm sorry for what you're going through too. We could probably get credit to go private but it's just working out if it's worth going into more debt for, you know? The stupid thing is the private consultant is the same as my NHS one! It would literally just be hoping to get in quicker, but because I have no idea when my NHS one would be it's hard to say.

She said if symptoms get worse then to go to A and E but with regards to the pain she said there's not a lot they would do except morphine me up lol. X

[Lou93 in reply to PurplePaganSpirit]

It’s alright and thanks I’m hoping to get a diagnosis soon it’s the not knowing.

That’s the only thing the cost of it and I know the consultant I’m seeing works with the nhs also.

Would they not reffer you to gyne if you go to a and e?? I went to a and e once with my pain and I was admitted under gyne ward and saw my previous consultant there and it seemed to speed things up but that was a few years ago xx

[PurplePaganSpirit in reply to Lou93]

Oh really? I suppose they might do that, if it gets even more unbearable I'm going to have to do something! I think I'll just ring the secretary again first thing Monday morning and with any luck I'll actually get to speak to her about how soon I can get an appointment. My mum's adamant she's taking me to A and E anyway if it gets any worse at all lol. X

[Lou93 in reply to PurplePaganSpirit]

Maybe that’s best if you can manage but

if you get any worse then I would go as they need to see you when things are bad in the nicest way I know it’s not the ideal thing as you wait for hours!! The only other thing is calling 111 and getting out of hours appointment they can refer you also or they can say go a and e I’ve done that aswell.

Xx

[PurplePaganSpirit in reply to Lou93]

I rang 111 last night that's why the paramedic ended up coming round, but that was because they were more concerned about the breathing really. Thank you for your advice Hun, if I get worse I will definitely get someone to take me in xxxb

[Lou93 in reply to PurplePaganSpirit]

Aww well don’t think your alone with it all sounds like your mum is worried. No problem take care xxx

[Phillipa43]

Hi, you are not alone. I had the Merena fitted 4 years ago at the same time as having Ablasion procedure. I recently went to clinic to have it removed as I started suffering from pain. The Gynacologist could not remove it after really pulling on the strings 4 times, I was screaming in agony begging him to stop. At this point the doctor booked me in for a scan/ removal in 8 weeks time. I lost alot of blood so rang my doctor, my doctor then sent me to the local Gynacology ward at the hospital. A doctor there examined me and sent me home with the promise of getting me into clinic within days. I did as I was told went home and struggled through 2 days in agony, still bleeding. I rang the ward who advised me to go back to them. I was then admitted into hospital to manage the pain and to attempt another removal process but this time with the scan in place so the doctor had a better chance of removal. Again even with the local pain relief I was screaming, it was horrific. The doctor pulled the strings so hard they snapped, I was informed that the Merena is now close to my womb Entrance but tilted and attached to C Section scar internally. The Gynacologist stated that she will not preform a hysterectomy as I am too high risk due to my 2 previous a.c. section scars. I have no sign of infection, no fluid so as far as she is concerned it can stay in there forever. It is one week on, I'm at home but still in agony, I feel like the coil has been moved to a point that it is tearing through tissue. I can not live like this. To top it all off 3 doctors told me that this has occurred because the doctor that fitted it did the ablasion at the same time so basically my uterus healed over the Merena coil. I was not informed that this could or would happen!

I have been given anti inflammatory pain relief that I place into my bum, they burn like hell. I suffer with Bile Acid Malabsorption, take acid binders daily so my Gp has said I can't use them but my consultant said I can use them for life! Sorry if I have babbled on, its 2.11am, I'm in pain and can't sleep so feel emotional. Any advice will be greatly appreciated, I can't carry on like this

[introuble]

Hi,

Please keep us updated and I’m praying for you

[Hannah0091]

Hey! Bless you, this sounds like a really hard thing to go through! Your symptoms sound very similar to mine. I’m going private where I can (because of £) but I would really recommend if you can to seak a good private gyne. It would properly cost you a couple thousand. You to go to your GP aswell and demand they put you through for a referal to the pain mangement specialist & explain how much it’s affecting your life. There is also a thing available to purchase online called a TENs unit for the meantime. I have one it’s specialist for women’s issues called Livia have a little dig into that the prices are all diffrent but my livia cost me £160 (with customs charge, from the USA)but it is worth every penny as it gets me out of bed in a morning. You are not alone and your pain is real and valid it’s not pleasant but don’t give up with it all, keep pushing & get what u need x I hope this helps

[introuble in reply to Hannah0091]

I heard about livia too, interested to buy but i bet it wont ship to my country

[Hannah0091 in reply to introuble]

They ship to most countries what country are u living in?

[introuble in reply to Hannah0091]

Malaysia

[PurplePaganSpirit]

Thank you all so much for your replies, and I am so sorry for all of your pain, even though it makes me realise I'm definitely not alone in this. Phillipa your experience sounds horrific, surely they have to get it out one way or another, they can't leave you in so much pain forever?! Thank you for the thought 'introuble'.

Hannah I just don't know if I can justify getting into that amount of debt, I think i'll just have to wait for my lap appointment through the NHS and hope that they can fix whatever it is Would they do a hysterectomy in the same op if it was required? I'm perfectly happy for them to do that lol. In the meantime I'll take my increased meds and hope they help, will definitely look into a TENS machine too if it helps that much! xxx

[Hannah0091 in reply to PurplePaganSpirit]

Hi, I understand the predicament your in and it’s a very personal choice but I would honistly sit down and write how much the pain & symptoms affect your life. I did this and it came completely clear. I’m not flush for money at all. Iv been out of work for 5-6weeks, I have a mortgage & I’m getting married in August and the thought of the £2,000 medical bills (which will be dept with the bank) I need to pay at the end of the month is really overwhelming but I trust my self financially to make it work as I can not continue in this situation struggling on. And it wasn’t untill I wrote it all down in black and white I sat there and thought wow if I can not afford to spend this on my health but spent as much as I did on my wedding dress then... 🤷‍♀️ but it is completely personal choice of course I’m just trying to put it out there so you have an idea of the risks I’m taking. (I know it seams mad and risky but like I say I do trust my self to figure something out, I always do so..) as far as I believe no they won’t. There are many different types of hysterectomy and some of them have to be open surgery and some key hole. Also I think they would fully diagnose and go through everything first and then look at next stages the tens machine does really help me x

[Hannah0091]

Owww bless you! Yeh I would highly recommend going private il private message you x

[PurplePaganSpirit]

Update: The secretary finally got back to me and it's worse than I thought, the wait is 18 approx from referral 😥 my doctor has signed me off work for a couple of weeks because I'm in so much pain but I can't afford to be off for months!! I'm booked to see a private consultant on Saturday, I'm just so scared I'm going to get into debt to pay for private laparoscopy and they don't find anything you know? There must be something there causing all this pain, It's just so much money. Any advice? Xxx