Help

[Lululemon98]

History: I have had several doctors visits NHS and privately. My last consultation was private and she suggested I have an internal scan and then a lap if nothing shown on the scan, which is great but the scan privately is £300/£400 plus clinic fees on top, I’m only 21 and can’t afford this at all. In my previous NHS vists I have just been told to carry on the pill, and that I may have endometriosis but there is nothing they are willing to do about it because the Lap doesn’t work and the operations involved are too big and don’t work anyway. That’s the same for if I have cysts or endo they refused to give me scans. I’m at a wits end with the whole thing. I have been back and forth to A&E and GP’s since the age of 14.

Question: The pain is getting increasingly worse, I can’t go for even a walk because the pain is too bad and I get it all up my side of my rips to my breast area as well as all over my abdomen and legs. But if I sit for too long, I also feel the pain because I can’t sit in the same position it makes it worse. Every time I sneeze or cough I have pain, every time I stand up and stretch I have pain. I constantly have trouble going to the bathroom as it hurts. Just normal day to day stuff it hurts and I’m stuck with where to go now or what to do. My private consultant has said she doesn’t do referrals to NHS and if I ask them for a scan I will be put on a waiting list for years or I just get ignored and told to go home

[Gothchic]

Hiya, so sorry to hear your in so much pain, maybe you can ask for a second option referral from your GP and ask to be referred to a different hospital, I believe you have a right to ask to see someone out of your area. Xx

[CryBaby91]

Have you considered switching private consultant? Mine has an NHS list and I made sure he was known for transferring over to that before I went to see him. He was amazing and I'm getting a lap in 3 month on the NHS. Please don't give up! Push for your care, they can't just leave you in pain and there's absolutely things they can do. Xxx

[Astro_kat in reply to CryBaby91]

Good advice CryBaby91. I managed to see the same consultant privately you recommended last week. Brilliant and like you felt listened to. I’m not doing so good (probably be use I’ve had zero treatment other than pain relief since late 2019) so I opted for laparoscopy privately. Would you believe Bradford rang the day after to offer to bring me in for surgery in 2 weeks time! I was told there would be an 8 month wait at Bradford and 6 weeks later I’m getting the op? What’s that about? Bradford consultant suspects stage 4 endo and bowel complications but should I be worried it’s progressing quickly? Anyways-here’s hoping You get your date soon too. Xx

[Peenie123 in reply to Astro_kat]

Can I ask how much a private lap costs please? Xx

[Astro_kat in reply to Peenie123]

Peenie123 about £2,800 -this May differ from different hospitals and consultants I guess. But advice would be to push via NHS if u can.

[Peenie123 in reply to Astro_kat]

Thank you- I have just come home from my sons’ footie game to an appointment letter from Colchester hospital gynae, but may still need private at some stage xxx

[CryBaby91 in reply to Astro_kat]

I'm so glad he helped you too! My GP is slowing my referral down so I'm still sat waiting to even get on the waiting list, I've been temped to do the same as you and get the private op if it carries on for much longer! Omg I can't believe they've actually said they will help, that's not like them at all haha. Xxx

[Lululemon98 in reply to CryBaby91]

Hi thank you for replying, I could see if I could switch but the fees are something I’m worried about. I would like to stay private as the NHS don’t acknowledge my pain like private do. I will keep pushing and hopefully get somewhere it is very exhausting 🤞

[CryBaby91 in reply to Lululemon98]

If you find the right consultant love then whether they are NHS or private doesn't make a difference, nearly all of the private consultants have an NHS practice that they work at my advice would be to do some research on all the BSGE registered endometriosis specialists in your region, find one that you think will be a good match and also has an NHS practice, then just pay for that first appointment to get in the door. After that they can see you for free if you get on and you think they can help, or you can continue paying privately. But it's all down to the individual consultant, NHS or not there are some fab ones who do listen xxx

[Lindle]

You have a typical scenario of endo that is being written off at a young age even though symptoms are progressing. This is a red flag for severe endo developing down the line. It is vital that you are seem by someone who understands both endo and the typical picture of someone such as yourself. Worsening symptoms that progress to lower back, leg pain/difficulty walking and bowel problems are typical and you need expert scans. Will pm you with some guidance.

[Astro_kat]

So sorry to hear you are struggling and in so much pain. It sounds like you need a diagnostic laparoscopy to get to the bottom of all of this and hopefully a management and treatment plan. See your other replies about second opinions. Good advice I’d say. Hope u get some answers soon. Take good care X

[Lululemon98 in reply to Astro_kat]

Hi thank you for replying, I’ve been told I need scans and then a lap via private but the fees are something I’m worrying about, and the waiting lists for NHS are so long. I’m thinking of asking for a second opinion I’m actually moving gp’s soon so may get a fresh insight. Thank you, you too x

[Astro_kat in reply to Lululemon98]

Lululemon98 I think changing to another GP might help but it’s a an understanding and helpful consultant you need to be under. It’s usual to have ultrasound scan.’,MRI scan and hysteroscopy before laparoscopy. All diagnostic things that help build up a better picture. I’m not an expert but I wouldn’t have thought you’d be listed for diagnostic laparoscopy without the other scans. Keep the pressure up to get scans in first instance as GP can sort these. I’ve seen 4 different consultants in just the last year all because my gynaecologist wouldn’t do a laparoscopy because of covid (even though other health trusts were) they were trying to find a non surgical work around (which didn’t come off because I need a laparoscopy) anyway because of the covid delays and things getting worse I think clinic need is assessed and fingers crossed you make some progress. All the best X

[Nikilll]

Your symptoms are all like to me. So I took pain killer tablet after 2 hours pain slowly down. Am consulted many gynecologist doctors. All are said my problem doesn't big issue. My abdominal, leg and back pain worsened after laparoscopic surgery.

[Missy100]

I am so sorry you are experiencing this. You deserve better.

First off, you are entitled to a second opinion from the NHS so if you have not followed this route I would suggest trying it. This applies to a GP or consultant Beware that often consultants within a hospital or trust may be the same team so you may be best off asking for a referral at another hospital. You can usually refer to the hospital website to find out who they have listed as consultants in their department and if you ask they should be able to tell you if they all work under one head consultant.

Secondly just refusing to do anything and leave you suffering in pain is not an acceptable option. I would suggest if you are getting no where with a second opinion that you write a formal letter of complaint via PALS. Do be aware that, like everything else, turn around times are extended and can take months.

In the meantime you may find a quicker turn around by taking a piece of paper and fitting as much of the following on it that you can:

-All symptoms

-Impact each symptom has on your life

-Pain levels and frequency

-Any patterns in any of the above (for example, is it noticably worse during certain cycle days or dod it use to only occur while on your period and is now daily).

-Any increase in severity or frequency that has occured while seeking treatment.

-That after several failed requests for a better solution to your suffering, you are formally requesting appropriate investigation, as required, for a definite and confirmed diagnosis by a consultant with a special interest in endometriosis, as well as a better solution for treating your symptoms and pain in the meantime.

Be honest. This is not the time to be 'strong'. You need to make sure they are taking it serious and realise how much you are suffering.

Ask for the document to be scanned into your medical record. Follow up by either checking online (if you have access to your medical record online) or requesting confirmation that it is now appearing in your medical record.

Sadly sometimes being faced with having something like this documented in a file is what it takes some to sit up, take notice, and do something about the issue.

None of this is an answer, but might help ease your suffering while you fight for the treatment you deserve:

- hot water bottle or microwave heat bags. My preference is flaxseed microwave bags. I get mine off etsy from a lovely seller who custom makes me pillow cases for them so I wash the cases (I have pets and my bags get a LOT of consistent use).

- tens machine. Lloyds pharmacy does a decent four lead one. You can use it with two or four leads. Replacement pads are cheapest on line in bulk.

- If you suffer constipation as a result you may find bowel massage helps. Google it and you will find some sites on it.

- If you need it and your GP won't prescribe you pain relief, ask your pharmacist what they can offer.

- I've found making some relaxing playlists and adding some short autopilot time targeted games on my phone can sometimes provide a bit of help distraction wise when I am in too much pain to focus on anything else.

- have some easy access clothing that doesnt put pressure on any painful areas and can expand (or won't fall down) when bloating increases/decreases through the day. Swing/ stretch dresses, stretchy skirts or pants with a tie waist that can be adjusted as needed.

- I have an inexpensive body pillow that can be great for supporting me in different positions when it is hard to find one that hurts less than all the others.

I hope there is something here that might help.

I wish you luck and success.

[Lululemon98 in reply to Missy100]

Thank you so much for taking the time to reply, I’m currently changing gp’s and I’m writing up a letter of all symptoms. I’m for sure going to try the things you have suggested, anything to cope with the pain 🤞 xxx