What to do while waiting?

[Kat2103]

Hi, I have had symptoms of endometriosis for years - my aunty had a full hysterectomy at my age so it runs in our family. I have struggled to get a referral until I’ve seen a wonderful doctor after moving. Still waiting on the referral but since then got admitted to hospital and saw a specialist who said he has put me on his waiting list. My question is how long do people generally have to wait and how do you deal with everything in your mind about how bad things may be in the mean time?

Any answers will be so much appreciated.

[purplevelvet9]

Hi! Pleased to hear you found a good doctor- this is a big step in the endo journey!

Once my GP referred me, it took quite a few months to see the specialist however when they then referred me for surgery, it was really quick. Weeks, I’d say.

The in-between bit is the worst. I’d say committing to your overall health- physical, mental, emotional, is key. I don’t know what is available to you but some suggestions are exercising daily, meditating, doing a fun hobby. Anything to keep you feeling good in general so when those thoughts and feelings come up, you have a good grounding to get you through. It’s not a perfect idea but it helps me a lot!

[Emmaja_ne]

I waited from august 2022 and was seen 3 weeks ago for my initial appointment. Was meant to have an MRI today which got cancelled last minute so now waiting another 3 weeks for this and then possible surgery.

In the mean time I’m on the pill which I take back to back which has helped a lot of the symptoms.

[BlueGiraffe9]

My approach was change what you can and try not to worry about what you can't. Chase the hospital up as they tend to lose you in a pile of admin so the only way to get moving along is to be irritating. There are many good books on managing endometriosis, so I changed my diet, did the recommended exercises and tried various supplements until I worked out what worked for me.

[TennisCourt]

Before I even knew what Endo was I referred to gynaecology from my GP. It was 1 year wait, and they just said come off birth control which made things worse!!

But anyway, back to the GP and I’m currently waiting again to see gynaecology this time with suspected Endo. Could be another year wait.

I’m currently looking into private. From what I’ve gathered you can be something like £250 for a consultation with an Endo specialist. Then can get referred back to NHS for surgery if needed. I’m just looking into this though!

It feels like a lifetime waiting for the NHS, I feel for you. This group is very helpful about symptom management and really good for your mental health, ie: not feeling alone with it all so that’s all you can really focus on right now x