LUpus Patients Understanding and Support
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Hello everyone!

Hello everyone!

I have not been on this wonderful forum for a long time. I had my personal and medical struggles and that prevented me from having energy to post here.

I hope everyone is allright or at least keeping strong!

I still have an UCTD diagnosis (since 2014) and my unknown collagen disease is getting worse. I got two newly discovered symptoms: blue sclera, see picture (is anyone familiar with this?) and slightly parrot beak nails on my thumbs, indexfingers and middle fingers. My GP just suggested to Google these symptoms.

Unfortunately I got diagnosed with severe endometriosis (DIE) in June 2017 and after long consideration and because of extensive adenomyosis I will get a major operation on March 2nd. I will get a hysterectomy and the endometriosis will be cut and burned away. Rationally I agree with the hysterectomy but becoming a mother is now very very far away 😢. My hubby and I look for a surrogate now.

So no good news but I am still hanging on and trying to be strong. Still able to work by have many sick days.

Please keep strong my fellow warriors 😘❤

1 Reply

I am very sorry to read that you will need a hysterectomy.

Although your post reads "up beat" you also write that motherhood feels very far away. This is a trauma, involving loss. Your hopes and dreams versus the "logical" need for the surgery and the pain of loss, for both you and your husband.

Patricia, I don't know you and hope this doesn't cross any line, but I feel strongly that you need and deserve, not just physical help from your doctors, but also psychological help. Of course, I hope you have family and friends who will offer you what you need, but I think it may be helpful for you to consider seeing a therapist. Sometimes, people feel this is a kind of failure of being strong and resilient but I think this is the opposite.

If you need to talk about what is happening, then please contact me. We can just talk or I can perhaps help you finding a therapist. I know that therapy is difficult to get under the NHS and often this is very brief - 6 sessions - which in your situation, may be very inadequate.

Do you know when you will have the operation? The operation itself is major, both physically and emotionally.

Whatever you choose to do, know that I will try and support you.

With good wishes,


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