Suprise Endometriosis diagnosis

[Wheezie72]

Hi,

At the age of 46 and after months of visiting GP with irregular bleeding, severe back pain etc I was referred to hospital as GP could not find my cervix following an internal.

Hospital said all looking ok but because of bleeding would refer for a Scan. Internal scan then letter requesting CA125 test and CT scan, then a pelvic mass had been discovered.

Laposcopy on 18th Dec, whilst coming round surgeon said he was surprised I was not in more pain. Overnight in hosp and told following day that I have severe endometriosis that has wrapped/ twisted round my bowel and is widespread.

Appointment in 8- 12 weeks to discuss surgical options.

Came home with no information, just a bottle of morphine.

Day 5 after surgery, wounds neat, taking it easy and reading up on condition.

Have strange tangled feeling under left rib and the usual back pain.

5 years of caring for a bed ridden teenager and thought my aches and pains were normal. I have a high threshold for pain but have been so out of tune with my body I thought this was normal.

Glad to find a support group and will attend the local group.

This is where I am at.

Wheezie x

[NW248]

You need to make sure that you get referred to an endometriosis specialist on the bsge.org/centre list. They are the only ones that should be doing surgery when it gets to this advanced stage.

It isn't at all unusual to be diagnosed at this late stage, many of us were fobbed off by doctors for years and told there was nothing wrong with us.

[Wheezie72 in reply to NW248]

Thank you will do some research.

[wanwood]

It’s amazing what we can rationalise as normal, wow. I was diagnosed in my 30s and I was surprised, even though I had a lot of pain and other symptoms.

I would recommend the Endometriosis UK fact sheets, especially on endo on the bowel and laparoscopic surgery. xx

[Wheezie72 in reply to wanwood]

Thank you, will do. I have a support group meeting locally in January I will go to. I also see that there is a specialist centre at Poole hospital. Thank you

[LittleG22]

I had the same thing about the doctor being surprised that I was not in more pain. I think that they just don't realise how much pain women can endure and still function. I also have a high pain threshold though.

The support groups are very helpful. I learnt more from them than the doctors I think! But I am not at a bsge centre yet.

[ChloeV]

Hi.

I think I understand the roller coaster you may be on at the moment. I’m 42 and I just got diagnosed in October with stage 4 Endo on bowels, cysts... a big mess. I had gone to GPs and gynaecologists since I was 15 with cramping, back pain, digestive issues and just told this was normal, given strong pain meds and sent on my way. I stopped asking anyone about it by 21 and think my high pain threshold was just my body learning not to listen to pain anymore as there was no alternative.

In October I started getting digestive issues including bleeding and this piqued my GP’s interest at last. A month later I had a laparoscopy and was diagnosed with Endo, but it was too extensive for my first surgeon to tackle, so they just removed the biggest cysts, put me on zoladex to stop progression and closed me up again.

Three weeks after that (2weeks ago) that I had an open surgery for a total hysterectomy and excision from my bowels. Recovering now.

It was amazing in the first few weeks of diagnosis to learn about Endo and piece together my body’s history. All these symptoms and events started to make sense and all of the missed opportunities for doctors to diagnose me where angering... it was powerful. I had not paid attention to my body for so long, partly because of how much it was hurting and not playing its part in my busy life. I think I am starting to realise I have to understand it better and even “forgive” my body a bit...

It’s great that you have found a group to go and meet with to support you with this. This site has been a great resource too. In some ways I feel lucky not to have known I had Endo when I was younger as I just got on with life the only way I could, but it does come at the price of a certain numbness and disassociation from part of yourself. This is even more the case if you are also a parent/carer.

Hopefully you get more answers, relief, support and care in the coming year! Good luck with everything and feel free to get in touch if you need anything at all,

[Wheezie72]

Thank you for spending the time to reply, hope your recovery is going well x