Just diagnosed and so many questions

[Needaholiday101]

I have just seen a gynae consultant who has told me that my ovaries are stuck down and they are certain I have endo and have said I'm to have a lap to try and remove and burn away the endometriosis. The appointment went so fast and I've now so many questions.

What happens if you don't have a lap?

Can the menopause make it shrink ?

How can I build my core if I can't manage pain ?

Are there any supplements that I can take to help?

Any dietary things to help?

If anyone can help with these questions I would be grateful. I was expecting this news today so I shouldn't be shocked or upset but I am.

Xx

[HT267]

Hi Needaholiday101, it's always a shock even when you know. Totally understand why you would be upset. I was diagnosed after a lap but the scans beforehand didn't show anything so even though I knew it was still so upsetting when it was confirmed. In terms of lap my personal experience - I had excision of endo and removal of adhesions this has greatly helped my pain as I'd found contraception wasn't something I could tolerate. It looks from the above that they said they were going to burn it away but that's not the gold standard treatment for endo now so might be worth asking about excision so they actually remove it all.

Not sure on menopause q

Building core muscle- I really struggled with this due to the pain I was in so only really got back into exercise after surgery but a physio might be able to advise on this?

In terms of supplements I have really found turmeric has really helped me with the pain as endo it inflammatory (i have tablets, gummies and it also comes in a tea!) but turmeric is also a blood thinner so obvs check it's safe for you (as I'm sure you would). I also find vit B and iron help with the fatigue that I get not sure if this is a symptom you notice ?

Hopefully some of the above is helpful. I would really push to have a telephone follow up to ask some more questions as you need some more info to make informed choice abd they do rush over everything. I think they forget how overwhelming this is for us sometimes!

Xx

[Needaholiday101 in reply to HT267]

Thank you so much ! I have done a little digging and may try a gluten free diary free diet , I need to loose weight and I've been comfort eating big time over the last few months.

I will try turmeric and vit b and iron and check through with pharmacy. I am constantly tired but I am not sleeping well at night lately due to restless legs

My coil has helped massively with the bleeding just not the pain.

It's so nice to talk to someone who knows what I'm going through. Xx

[HT267 in reply to Needaholiday101]

No worries at all. I tried partially gluten free and really helped especially after surgery so definitely worth a go. Dairy free didn't do much for me but it really helps some people x

[Moon_maiden]

Hi

It is a bit of a shock, I was diagnosed at 51, I sort of suspect that I started going into peri menopause/menopause and system went haywire. They know that menopause isn’t a cure all the time.

I wish I’d got diagnosed years ago and had a lap, hindsight is wonderful 🙄 It’s a personal decision really on diagnosis/symptoms. What works for one doesn’t necessarily work for everyone. I’ve had a hysterectomy and some of the pain has gone but I’ve still got abdominal pain. I did also have dodgy gallbladder.

I’ve tried various diets/foods, an anti inflammatory diet can help many and there have been positives on the forum. I’m not sure if I’ve remembered the name correctly, Jessica Duffin has some good podcasts on diet/foods

If you have questions that only the consultant can answer email the secretary, they are usually quite helpful.

[Needaholiday101 in reply to Moon_maiden]

Thank you so much that's given me a different perspective on lap as I assumed with hysterectomy it meant that's the end of the pain. It's so complex .

I will check the podcasts out also. I need to loose weight and as I've no gallbladder I can't really have fatty food or spice food. Bread is my downfall and I just need to come up with ideas.

Good shout with the secretary, I've not been given contact details but I shall have to ask.

Again thank you xx

[Moon_maiden in reply to Needaholiday101]

I wish I could say it was, Drs are only just recognising it and there’s probably many who don’t.

Many try gluten free, you might want to look in to that a bit more. I’ve never eaten much bread, but I’ve had tests for gluten intolerance and was ok. Could be worth you getting that checked with GP.

PALS can give you their email address.

🤞 for you

[Needaholiday101 in reply to Moon_maiden]

Thank you ! Pals actually helped me get the consultant appointment within a week. Long story short , I was referred to gynae and was told it would be a years wait. One evening I was in so much pain I went to a and e and was referred to have a scan and see a gynae Dr in surgical receiving unit straight after. I was told that I would need a biopsy within two weeks as I had thickened womb. I ended up calling to see about the appointment after a week and they had no record if it. I ended up getting pals involved and they discovered that I was told completely wrong. I urge anyone having a wait or struggling to contact pals.xx

[Moon_maiden in reply to Needaholiday101]

That’s really good, shows appointments are there. I threatened gastro with PALS as it was a ridiculous wait and suddenly an appointment the next day.

The lack of communication is terrible, if you don’t chase things up these days you get nowhere 🙄

[Needaholiday101]

It's so shocking it really is that you have to go to such lengths to be heard or seen.

[EmB18]

It is all a bit overwhelming when you first get diagnosed. I found diet made a big difference to my endo symptoms. We are all different, but taking out wheat and sugar really helped me along with adding it lots of anti-inflammatory foods and working on managing stress. Pelvic physio can help with pain too and they can advise you on building core strength. Good luck.