Is it back...again?! Really struggling to find the strength to deal with this 😭

[Sylv_99]

I’m just wondering if it is possible to get endometriosis again if you’ve had a hysterectomy and your ovaries removed? I’m on HRT because I’m only 30 and I was told there would be health risks if I didn’t have an oestrogen replacement. Can endometriosis grow/return because of the HRT?

In the last few days I’ve started having the horrible, all too familiar, pain that has always eventually returned. My op background is that I had 2 laparoscopies, then a hysterectomy, then another laparoscopy, then an oophorectomy.

I’m imagining we all feel similarly but every time the pain returns I feel like I lose strength to deal with it, like each time it chips away at me. Do other people feel the same?

[libbycraft]

hello

I'm so sorry to hear you are struggling. I can empathise with what you say about feeling worn down each time you have surgery. I struggle worse with each recovery.

From the research I have done and the talks I've had with Endo specialists, hysterectomy is not a cure for endo I'm afraid. It's only a cure for adenomyosis. Sadly, if there have been endo sites around before the hysterectomy that haven't been spotted on previous laperoscopies then they can grow over time. Are you with an Endo centre specialist? You can check on the BSGE website that the surgeon you have is on their list. If not, I would ask if you can be referred to one.

At the moment I know you must be feeling without hope and so deflated. Honestly, with the right surgeon you will get some relief. Please keep going, keep researching. Make sure that you are getting excision surgery, not laser. Laser just takes the top layer of endo off, it doesn't kill it at the root.

I've been there, where it feels like you can't keep going through appointments and surgery etc. Sending you gentle hugs.

Fellow Endo sister x

[Sylv_99 in reply to libbycraft]

Thank you so so much for replying, I can’t tell you how much I appreciate it. I moved to America last year and so I’m feeling pretty isolated as in the UK I had an amazing consultant, an endometriosis support group that I attended and great friends who understood everything. I’m only beginning to build relationships here so it’s hard to lean on people for support at this stage.

My consultant did excision surgery and he was a BSGE surgeon. We thought I had adenomyosis which is why I had the hysterectomy.

I will definitely be looking into surgeons and researching the best places here in America. Thank you for confirming that I’m not going crazy and that it probably is more endometriosis. I’ve had so many dismissive health professionals in the past that you sincerely doubt your own judgement sometimes!

xxx

[libbycraft in reply to Sylv_99]

Ahh you are more than welcome. I understand it can be very isolating. I hope that you can soon build up some good friendships and connections in America. If you are on instagram there is an American Endo account run by a surgeon - it's called - @newyorkendometriosis. If you contact him on there, he maybe able to direct you to a clinic that might be able to help you.

You're definitely not going crazy! It's misinformed people who should know better who make us feel that way.

Without sounding corny...you've got this, look how far you have come you can keep going.

xx

[Sylv_99 in reply to libbycraft]

Thank you - I’ve just followed him on instagram and I’m actually in New York so he might be a good place to start!

Doesn’t sound corny at all, I appreciated hearing that!! xxx

[libbycraft in reply to Sylv_99]

Ohh that's brilliant! I hope he can help you. Please keep me posted. I'm also on Instagram if you wanted to stay in touch. (same username as here). Xx

[Sylv_99 in reply to libbycraft]

I’ve added you on Instagram, I’m sylviacross_

xxx