Endo is back

Hi,

I had my laparoscopy in April 2019. So within 12 months of the ablation, I am having symptoms again, even though the pill I’m on (cerazette) is supposed to ‘suppress’ my symptoms and I do not have periods. They are getting more and more prominent each month.

Straight away I feel lonely again. I think one of the worst parts of the disease is feeling alone and isolated. I’m so fed up of how I am made to feel when I talk to someone. I get comments like ‘yeah I had a bad period once’ or ‘oh there’s always something medical with you’. Honestly I’ve given up talking to anyone. It just infuriates me. Nobody has any idea. I wish just one of them knew the pain I’ve had. My partner is good as he’s seen it with his own eyes, but I still worry he thinks I just complain all the time.

I want to talk to someone about it without them thinking I’m being a hypochondriac or that I’m just moaning again. I want to talk about it freely and openly and just discuss with people about the different options, my future worries or just tell someone what it does to me without them pitying me. I just want to get it all out of my system and voice my worries or concerns without someone rolling their eyes. I’ve talked to my partner about it and he understands, but I don’t want it to burden our relationship and I am careful not to talk about it too much. I just feel like in general I’m not allowed to speak about it.

Anyone else feel this frustration? Or am I just being a little highly strung? I’m thinking about finding someone that lives closeby who I could be friends with and we can openly talk about it with maybe some constructive feedback, rather than pity. Im just not the biggest social bunny in the world! I only have a handful of friends but none who I want to talk to about this anymore.

Sorry for the rant! Xx

[Gianina]

Hi Kitty, if you want a true friend in this, I am here for you, the mistake with you was that you must ALWAYS ask not for ablation, but for excision! It is a big difference, search online and you will understand. Excision is eliminating the lesions , while ablation is just burning their edges- for which reason their recurrence is so fast. You need to mention to the doctor " I want excision".

[Hidden in reply to Gianina]

Yeah thanks, I know I need excision. I’m going to tell them I want it next time I have surgery. I didn’t really know much about excision vs ablation it on diagnostic lap, and I had also talked myself out of them finding anything as the doctors played it down so much, I felt like I was making it up. Until the pain comes and I would realise it was very much real.

[HelenESR]

Hi, I feel exactly the same, my boyfriend and family are brilliant but I feel like I talk about it too much and don't want to weigh them down with it! Always here for a chat if you need it! Xx

[Hidden in reply to HelenESR]

Thank you! It’s hard isn’t it. Hard to not let it take over everything. I’m trying not to put it too much on my boyfriend. But he lets me rant if I need too. I guess he knows il feel better once I get it off my chest xx

[Albeon]

It's totally normal to feel frustrated. For a start most people don't, or won't, understand the problem let alone understand how difficult it is to deal with. It's not easy at all.

I don't feel like I've been able to talk about it either. To be honest the couple of times I have been able to talk about it have usually been with doctors and in those cases I just start crying really badly lol, kinda awkward but I can't help it as I never get the chance to mention it. No matter how alone you feel you're not alone in this.

[Hidden in reply to Albeon]

Thank you so much ❤️. I don’t know what I would do without these online communities, just helps you to remember that there are people that do understand and know.

I couldn’t really talk to my doctor like that as she downplayed everything, though maybe it will be different now I am going back with my diagnosis, but yeah you are not alone there, I have cried at her many of times!

Xx