Any recommendations for a good gynaecologists please

[Yogam]

Hello, my daughter has had terrible, debilitating pelvic pain for over 2 years now - it gets so bad she can hardly walk. Can anyone recommend a good gynaecological consultant (anywhere in Scotland) please.

Thank you.

[Alaine1 Administrator]

Hi,

I don’t know if your near Edinburgh? Prof Andrew Horne who we know very well as a charity is director of the endometriosis centre but they also deal with pelvic pain. It maybe that your daughter has endometriosis but sometimes an underlying cause can’t be found but treatment options are still available. It could also be a non gynaecological cause such as interstitial cystitis which isn’t bacterial in origin and I know from personal experience how painful that can be. But again there are treatment options available for both. I’ve got both conditions alongside adenomyosis a sister condition to endometriosis that can occur along endometriosis or on its own. The treatment is exactly the same except there is no surgical option unless a hysterectomy is needed or an adenomyoma is present (very offered below the age of 40 and comes with additional problems).

At this stage I’d definitely suggest keeping an open mind on potential causes especially as 50% of women undergoing a laparoscopy in a specialist centre have no endometriosis but another cause to explain there pain. Some women will have an extremely painful type of IBS that can be extremely debilitating. You don’t have to suffer with diarrhoea or constipation either. Some just have pain.

I’ve included the link for Prof Horne’s page which also includes his NHS secretary’s contact details. I’m not sure how long the waiting times to be seen and for surgery in Scotland are but in England depending on specialty it’s 1-2 years at the moment. Hopefully the figure will be revised and the NHS will be able to catch up. So it might be worth while asking the secretary. If the waiting times are very long they might start her on medical treatment which I’d advise her to take - they do have options that GPs don’t always use. Other things I’d advise:

Keeping a detailed pain diary. This can be done in a note book and should include pain rating out of 10. 0 no pain, 10 being the worst pain. Also location as this can change daily and through the day. Do put this down as it’s important. Type of pain. This can sometimes be difficult as crampy pain to one person might be described as something different to another. But still important to note down. Other symptoms- increased urination, pain in back.

Asking the GP for pain relief. It maybe she needs something like codeine with paracetamol but can also take ibruptofen. You wouldn’t take all together but take the codeine and paracetamol (usually combined in one tablet) at say 7 am and then the ibruptofen at 11 am. Then by 1 am take another codeine and paracetamol. This is only a suggestion. The GP might only want the codeine based medication taken twice a day as like most opiates it can be addictive. There are other opiates available but without a diagnosis most GPs are reluctant to prescribe especially if needed daily and the regulations around prescribing have changed around opiates in the last few years. If she takes NSAIDS like ibruptofen ask the GP to prescribe something to protect the stomach or to prescribe a gastric friendly NSAID.

Ask the pharmacist as they are the experts in medications, doctors are the experts in illnesses and diseases. They can give some excellent advice about getting the most from your medications.

Look at non pharmaceutical approaches such as mindfulness. Also stick on heat patches which isn’t always ideal during our current mini heat wave but I’ve relied on them a lot over the years. The best ones I’ve found as they get hotter plus last long than the more expensive ones is the pound shop. They say lasts 8 hours but I’ve known them to last 12 hours which is ideal for work and as they are cheap it’s affordable to have one on the pelvis and one of the back if that’s also a problem.

Look into pelvic physiotherapy (sometimes called women’s health physiotherapy) as pain can result in overly tight pelvic floor muscles which can generate even more pain. I’m not sure if you are able to self refer in Scotland? You can for NHS treatment in the UK but privately here no referral is needed. The only thing I’d advise is checking that they do trigger point release as not all women’s health physiotherapists are trained to do this.

I hope this helps but if you need anything just shout or message me privately if you prefer. Please let us know how your daughter is getting on.

ed.ac.uk/centre-reproductiv...

[Yogam in reply to Alaine1]

Thank you so much for all the information, it's hugely helpful. My daughter already does a lot of what you're suggesting - she doesn't, as yet, have a specific diagnosis but the pain she suffers is truly excruciating. I'll contact the Edinburgh clinic and ask about a referral today. Many, many thanks.

[Catsalas]

Hi I’ve been taking Amytriptiline for 2 years now . Pain 0. But I’m still dealing with pudendal neuralgia . Next step: nerve block I think. Good luck!