Is my pain normal & what to expect from first Endo Appointment.

[Snuffle007]

HI There

I am 43 and back in Early July I had been really suffering with abdo, hip & back pain. It all ended with me collapsing in my GP Office, then into A&E on Morphine, Ibruprofen, IV Antibiotics and a week admitted to a ward. Then I had basically 4 weeks signed off work due to pain.

Since then I have been on Oral Morphine, Co-Codamol and standard Paracetamol. Still am.

After a CT, Ultra Sound and an MRI they say I have endometriosis and PCO. My first appointment with the Endo Specialist is next week.

My MRI said I had multiple Fibroids, some up to 5mm thick, I had cysts on both ovaries (some up 6cm and showing a chronic hemorrhage), and my ovary and uterus have adhered to my bowel. I am also showing cysts inside my uterus, and possible cysts on my kidney and liver.

I then ended up back in hospital again in August after another massive flair of pain was given an injection of Zoladex (another due this month)

My question is, is it normal to basically always be in pain? Some days are better but some days are so bad I can barely move. I was given oral morphine to take when the pain is bad and I am being very careful with this and not taking it everyday and if I do, I take it in the evenings only and in small increments so I don't usually take my full dose.

I'm 43, childless with no desire to have children. In my first appointment with the Endo specialist, what can I expect? At my age I am perfectly fine with having my ovaries and Uterus removed because I can't live like this. Is this something I can request?

I am just so exhausted both mentally and physically that I don't know how to continue. My work have been great and are allowing me to work from home whenever I need to take my Morphine during the day or the pain is very bad. But I can't keep on like this forever.

Any help or advise would be greatly appreciated.

Thank you

[Sunset-lady]

This is tough and I feel for you. Everything seems to flare with peri menopause. I'd give zoladex time to work as it usually takes a couple of months. If it relieves the pain then I'd ask for a hysterectomy. It's not a guarantee of no future pain as endo is a life long disease and unbelievably makes its own estrogen but for some women it's life changing. Once you get the hormones (you'll need both progesterone and estrogen if you have endo and possibly testosterone) balanced you could well thrive xx good luck xxx

[Snuffle007 in reply to Sunset-lady]

Thank you. That is very helpful.

[AllthatGlitters]

hello yes you can request a hysterectomy. I am 42 and doctors told me aged 35 I would need a hysterectomy. It’s horrible to live in daily pain along with everything else that goes along with it - when you have your consultation you are well within your rights to tell them what you expect / treatment etc … if you do opt for surgery ask them what surgical list they will put you on (urgent, category 1) as they come with timescales and I would push for urgent given the fact your in so much daily pain xx

[Snuffle007 in reply to AllthatGlitters]

Thank you. I will remember that in my appointment on wednesday@

[Joonaspryte]

as someone else said, endo is for life and will probably always need to be managed , I had a total hysterectomy bilateral salpingo and both ovaries taken 16 years ango for PID, no one noticed I must have had endo too, but here I am 16 years later, aged 58 and been diagnosed with endometriosis, which seems to have spread everywhere, pelvis, bowels and diaphragm.

So it’s not always straight forward I’m afraid. 😞😞😞

[Snuffle007 in reply to Joonaspryte]

I am sorry to hear that. This diagnosis really is the icing on the s**t cake for me unfortunately. Other health issues that cause bad pain on top of severe anxiety and depression. Its all just a little overwhelming

[LME5]

I'm sorry to read about your health condition and debilitating pain. Women with endometriosis can feel immense pain from 'mild' endo categorised as stage one. Degree of disease does not technically equate pain. Given that you're yet to be diagnosed with endometriosis (you're probably aware that it can only be officially diagnosed via laparoscopy surgery), but you have several other diagnoses including uterus and bowel adhesion, fibroids, ovarian cysts, cysts in the uterus and cysts on other organs, I'm not surprised to read that you're in pain daily.

I have to ask, did you experience any telltale signs before your pain got so bad you visited your GP and collapsed in their office? I'm curious because I know of women who experience mild symptoms and have brushed them off until a major episode happened, and other women who go to their doctors with continuous immense pain and are fobbed off with an IBS diagnosis.

With regards to your upcoming endo specialist appointment, I would initially discuss the possibility of having the fibroids and cysts removed, the adhesion remedied and any potential endometriosis (lesions) excised. Excision is the best form of treatment surgery for endo as opposed to ablation. You may be told that there's a high probability that they'll end up having to remove your uterus & ovaries, which from what you've shared, you seem to be at peace with. However, as Joonaspryte points out, hysterectomy isn't a cure for endometriosis. Endometriosis doesn't have a cure. And you'll need to discuss the possibility HRT with your gynae because some women are refused due to the oestrogen and end up developing osteoporosis. So there are a lot of life-changing factors to consider. If I were you, I'd do my research beyond what the doctor tells you. Make sure you're fully informed before taking any decision - including informed consent meaning you are made fully aware of the risks of your surgery.

I hope that helps