First post .. A I fighting a losing battle?

[megg37]

Hi all,

This is my first post, but I feel like this is my last hope.. I don't know where else to turn to..

I am 24, mother of 2 children. Pain started when I was pregnant with my youngest. Everytime my husband & I had sex, right afterwards I would get pains that literally felt like contractions & so doctor advised to stop having sex, which we did.

After giving birth, & we had sex the contracting/crampy pains returned. Obviously now knowing they weren't contractions. The pain is at it's worst a few days after my period has finished. I wondered if penetrative intercourse was the cause but even if there is no penetration & I have an orgasm, within half an hour I am doubled over in pain. We rarely have intimacy anymore because he doesn't want to cause me pain and to be honest I cant face the pain. The pain is now there pretty much everyday!

I have been going to the doctor for over 3 years now.. During this time they have prescribed various painkillers & referred me to a gynaecologist.

I am currently on 50mg amitryptline at night and cocodamol 4 hourly, sometimes even more frequent when pain is really bad. I have my scorching hot water bottle pretty much 24 hours, so bad I now have quite severe Erythema ab igne on my stomach. The amitryptline definitely helps through the night, I can get a few full nights sleep a week but some nights even that doesn't help. I feel the pain gets worse as the day goes on but I wonder if this is because the amitryptline will be wearing off as the day goes on.

The bloating is so bad I have to wear my husband's baggy t-shirts to bed as none of my clothes or pjs fit at night. My big bloated stomach is SOLID. I take pics before bed then first thing in the morning and the difference is UNREAL. I look at least 7 months pregnant before bed.

I waited 7 months on the gynaecologist waiting list, whilst on it I was so desperate I was looking for private healthcare but there's no way we can actually afford it! I finally got seen 3 weeks ago. Had such high hopes for my appointment. I was in there less than 4 minutes. In, on table, extremely uncomfortable internal scan, told scans showed no cysts, she diagnoses as chronic nerve pain & suggested alternative painkillers will write to GP and back out. No questions or discussions whatsoever. Have had bloody discharge & small amounts of red blood since the appointment. 17th day of blood today.

Had my telephone appointment with my GP this morning following up the gynae appt & he said she recommended Gabapentin for pain & that was it. I refused, as my mum takes gabapentin and is like a zombie. I have 2 young children and I work, I can't be a zombie! I can't just numb pain the rest of my life! I already struggle waking up in the morning with the amitryptline. He said I need to stop fixating on finding a cause for the pain & just deal/manage with it. I said if it's just nerve pain then why do I randomly bleed with the pain or after intercourse or orgasm he said it is common for women to randomly bleed and he can put me on a contraceptive pill to regulate bleeding. & the bleeding post internal is probably due to irritation from the internal..

It was him who suggested endometriosis not me, even though it runs in my family.. and so when I brought it up he said the scans have shown anatomically there is nothing wrong so they have ruled that out, but I thought end couldn' be seen on a scan?

I don't know what to do now? Do I just accept it's nerve pain & spend the rest of my life on painkillers or do I keep looking for answers? Is this all in my head? Is there any other self help I can do. I have been looking at endometriosis diet & will try that as well

I can't stop crying, I am so deflated by this news. I feel like I can't do my job properly or be a good mum or wife at this time with the pain and mental torture.

Any advice atall is welcome! Thank you for reading!

X

[megg37]

Also must add, I do have a relatively high pain threshold which worries me even more that this pain is so painful! It makes me think something must be very wrong.

X

[Catness]

I’m so sorry to hear how bad it is 😞 and the frustration must be driving you crazy.

For what it’s worth I’m stage 4 endo with adenomyosis and interstitial cystitis and I had a scan shortly before my first lap which came back totally clear, everything was fine. And so the NHS kind of washed their hands of me.

I know you said you can’t afford private healthcare (and I completely understand as it’s very expensive). But would you consider saving up and paying for an initial consultation with a private consultant? This is around £180. I know this is still a huge amount of money however I always advocate for this as after the NHS basically told me it was ‘all in my head’ I found a gynaecologist consultant online who specialises in endo and bladder issues and paid to see her privately. I was seen within two weeks and because the level of expertise was just so much greater she was able to immediately say she thought I had various things going on, as well as endo, and re-referred me back into the NHS to have a lap which not only meant I was in very safe hands (hers) but that the waiting time had been dramatically reduced and it was obviously free. Could this be something you think about doing? If it was something you were interested in you would need to find a private hospital near you (such as Spire, BMI or Nuffield) and then search their web page for specialist consultants who specialise in endometriosis. A quick google should tell you if they also work for the NHS.

At my first appointment I took a symptom diary that went back years. I told her absolutely everything I could remember and that was very useful for her. After the lap I was told I have stage 4 endo and the other conditions I’ve mentioned and it just made me furious that the gatekeepers in the NHS (GPS and gynaecologists) just don’t have sufficient knowledge to help/ make judgements on cases where women have endo or similar diseases.

I’m not taking away from the fact it’s a lot of money to get together but I think I would still, after all these years, be waiting on a diagnosis if I hadn’t paid out and seen a specialist

Whatever you decide to do I wish you the best and hope you get the help you need soon xxx

[megg37 in reply to Catness]

Hi,

Thank you for your reply!

I didn't realise you could pay for private healthcare to get the ball rolling then transferred back to NHS. Yes it is a lot of money but I'm sure we could scrape together for initial consultation! I was just under the impression we would need to pay for all the appointments including surgery which my GP told me would cost us in excess of £5,000.

So I should look for a local private healthcare provider, & an end specialist or gynaecologist for an initial consultation then they could refer me back to my GP with their findings?

It's honestly terrible people aren't taken seriously. I didn't realise how big this thing actually was & it seems so many women are suffering and FIGHTING for a diagnosis and treatment! It might not even be endometriosis but they can't really rule it out if they haven't done the necessary examinations?

I am just desperate for an answer to what this pain and bleeding IS caused by!

Thank you again! X

[luthien in reply to megg37]

So sorry to hear what you're going through

Have you looked into private healthcare through your work? My workplace offers it as part of their benefits, I know for some workplaces it's free and others you pay a bit per month (my husband pays his work and it's about £20 per month). The work medical insurance is the only way I've managed to sort out my private treatment for endo, I wouldn't be able to afford it otherwise. Some private clinics offer their own medical insurance for personal customers and payment plans too.

Catness has good advice

[Hazel173]

I would push for a laparoscopy surgery as it is the only way to properly diagnose endometriosis. I had an ultrasound not long before my surgery which showed every thing was fine but I pushed to be referred to a gyno and I was diagnosed with stage 1 endo through the surgery.

In regards to the gabapentin you might not react the same way as your mum so it might be worth a try. For the first two days using it I did feel drunk but after that i didnt feel anything. It didnt help me with the pain but I know it has helped some people.

Could you phone the gynos secretary and ask for another appointment? Ive done this before as it would have taken ages to go through the gp referral route. If you get an appointment write all your symptoms down on a list and give them the list so they have to read it and see exactly how this is affecting you. Push for the lap surgery through, its sad but with endo you have to fight to get the right care.

[megg37 in reply to Hazel173]

Thank you so much for your reply! How can I push for a laparoscopy? Like what would the process be? Just keep asking my GP or the practice manager or directly to the hospital?

I might try the gabapentin then, I will need to take a weekend off work & try it while hubby is off work to help with the kids. The thought terrifies me of having a drunk feeling and being responsible for my children at the same time!

Thank you again for your reply, it means a lot! X

[Hazel173 in reply to megg37]

You could ask your gp to refer you back to the gyno and really fight your case saying that you feel surgery is your only option or phone the gynos secretary (just phone the hospital and they will direct you to the right number) and ask for another appointment. Anything is worth a try.

With the gabapentin they usually start you on a low dose and gradually increase. Unlike codeine its not a quick fix it needs to build up in your body and can take up to a month. It took me 3 months and the full dose to know it wasnt effective but could be worth a try. Even after a few says if you still feel like a zombie you could decide its not for you but then you know at least you tried. X

[EUKSupportTeam Partner Endometriosis UK]

Hello megg37. I'm sorry to hear that you are struggling so much at the moment. Have you looked at the BSGE website bsge.org.uk/centre/. This has a list of all the accredited endometriosis centres in the UK, it might be worth getting a referral to the centre closest to where you live. If you feel you need some support, Endometriosis UK run a helpline staffed by volunteers. The Helpline opening hours are on our website endometriosis-uk.org/helpline.

I hope you find some help soon

Lynne - Endometriosis UK

[megg37 in reply to EUKSupportTeam]

So can I request my GP refer me to one of these specialist centres?

Thank you so much for your reply! I will definitely have a look at the Helpline.

Thanks x

[EUKSupportTeam Partner Endometriosis UK]

Yes, have a look at the list of centres and find one that is convenient to get to.

If you want to phone the Helpline, Friday afternoons are often quiet

[megg37]

**UPDATE**

I emailed my local NHS complaints board about my situation, they got back to me within hours apologising profusely and promising to deal with it.

Received another email today to say the complaint has been passed on to my GP practice manager as they have a duty of care which is not being followed.

They also asked if I would like to make a formal complaint about the Gynaecology service I received or therefore lack of, or if I just wanted to go ahead with a re-referral.

I replied that I didn't want to file a formal complaint, I just wanted to be re-referred and hoped that I could go forward trusting the NHS rather than fighting against them.

No energy to fight complaints, the pain is zapping it all from me

Will update again if anything changes.

Thank you everyone for your support

xxx