Endoworrier's Status Updates

I'm so sorry that you are going through a concerned moment right now dear Endoworrier. We're here if you need to talk, vent or just need some support. 💛. I hope you were able to get some rest and peace and quiet these last few days.

hi and thank you for your message - I wasn’t aware that comment was public lol. Yesterday was really rough, the night before I felt something strange happening around my left ovary (I had my right one removed in 2020) - I didn’t get to sleep until 4am then was woken abruptly at 7am in agony. I had to take 3 endone in six hours to keep the pain down. I had some brown ish discharge which makes me
Think perhaps it was a burst or leaking endometrioma. A similar thing happened last month. I’m seeing the gynae 16Th dec to discuss my options. I have stage 4 endo. I’m wondering if a hysterectomy may
Help. I’m definitely becoming tired of the acute pain I’ve been experiencing lately. Thanks for listening. Today I have been better although the pain increased around lunch so I’m currently in bed resting. 😊

Hi , I'm so glad you checked in here with your concern! (and thanks for your perfect user name--makes me smile 😀) Sounds like a super hard day--glad to hear that you're feeling a bit better and that you're able to rest. Even better that you have a gynae appointment scheduled soon.
It sounds like you have good medical support and are knowledgeable about your options, but here's a link to an article on hysterectomy for endo: https://endometriosis.net/surgery/hysterectomy
Take good care of yourself and please let us know how you get on with al of this. Sending my best wishes! -Audrey (endometriosis.net team)

thanks for the link, I’ll definitely take a look. I’ve had issues with my gynae lately. The one who performed my surgery last year is on maternity leave, I’ve seen one since who’s now left and the so I’m seeing a new one in December. I must admit I’m skeptical about it, but I don’t want to wait. Im concerned my periods are very irregular. I had a Mirena fitted during surgery which worked for around 8 months then the periods came back and since then I’ve been living with debilitating pain, unable to work or even go on short walks some days. Thanks for listening, I’m open to any advice or suggestions you might have. 😊

Oh gosh, it can be hard to change doctors mid-stream. But I think you are right not to wait, and to be seen soon to check this out. It's so hard to be in so much pain, and I think it's best to get the pain and bleeding checked out. Hopefully this new doc will be thoughtful and kind. They should have some options to discuss with you so that you can plan a way forward. How are you managing in the mean time? Please stay in touch here and let us know how you are holding up. All the best to you! -Audrey

thank you for your kindness. Things were improving this past week since the acute attack I had last week. But then last night I got rather sharp stabbing pains on my right side which was new and I felt confused because i don’t have my right ovary. The pain has been radiating up my right lower quadrant and I’ve gotten quite bloated again. I have my gynae appointment next Thursday, so not too long to wait but I am feeling concerned since this feels like a different kind of pain, in a different area. I welcome your thoughts.

Oh no! So sorry you have been dealing with this dear warrior! I hope someone else can shed more light but I will say, I have that same stabbing right side pain. I just got my appendix out yesterday my GYN said it could be what was causing the pain. Of course it is still a little too early to see, but I am hopeful that it does help. I hope you find answers too! Sending big hugs <3 -Kimberli (endometriosis.net team member)

I'm so sorry there is another pain giving you trouble, ugh. It is not a surprise that you might have pain on the right even though your right ovary is gone. Pain sensation from internal organs is not mapped as precisely as it is in the skin--meaning that pain from a particular internal organ is not necessarily felt in the location of that organ. The nerves are just wired differently. Or you could have some scar tissue in that area from your previous surgery. Whatever is going on, I'm so glad that your appointment is coming up soon. It's hard not to have answers; at least for me, if I don't know what's going on I tend to make up all the worst possible things. So I hope that your new doc is a good listener and makes a plan with you to figure this out. Keep us posted--I'll be thinking about you. -Audrey (endometriosis.net team)

thank you for your kindness. I had my gynae appointment on Friday, she was great at discussing all my options both hormonally and in terms of nerve pain considering how invasive the endo was/is. She did a scan and it revealed my left (and only) ovary is hugging my uterus, and there’s a possibility a cyst or endo is sandwiched between so when my ovary is active, that’s why I’ve been experiencing pain which she likened to appendicitis. The mirena doesnt seem to have shrunk any of the lining size so I’m going to try giving Visanne a go.


She said I have two options regarding surgery - go in and have a look, plan and discuss next steps for a bigger surgery. Or have a hysterectomy and do any excision work at the same time too. I’ve decided I want the hysterectomy. I don’t see the point in putting my body through two surgeries, because given her findings it’s unlikely ‘having a look’ will be enough. If you have any insights, I’m happy to listen. Thank you for your support 😀

I hope so and pray you find relief soon.

, I am so glad to hear from you! And it's really nice to see your photo 😀 It's so great that the new doctor was helpful at getting you information about what's going on, and your options. Starting a new medication sounds like a good first step while you think about the long-term plan.
Whether or not to have a hysterectomy is a big decision, with obvious permanent consequences. It sounds like you had a clear discussion with your doc about how things might go. Now the important things is weighing the pros and cons for your particular situation, and only you know how those balance out for you. Here's a link to an article that shares hysterectomy experiences from community members: https://endometriosis.net/living/hysterectomy-stories
And we have plenty of articles here about how to prepare for surgery and what to expect from recovery, if/when you finalize your plan.
Know that I am thinking about you as you weigh your options--please stay in touch. Best wishes to you! -Audrey (endometriosis.net team)

thank you for your support. I'm grateful for the useful resources you shared and will definitely take time to read through the stories.


I made the decision to go ahead with the surgery to free and preserve my left ovary, remove and Endo and also my uterus. I'm down as a Cat 2 (semi-urgent, within 90 days) with surgery initially scheduled for Feb, then 24th March.


But the day after I sent all the paperwork off, the government made the decision to suspend all Cat 2 and 3 surgeries in the state where I live in Australia (Victoria) because of the increase in COVID19 cases.


This has been a real knock, like the light on the horizon has once again vanished. So I've been working on trying to accept my situation as it is now, and really just living day to day, in the present moment as there is no telling when things will change and getting worked up about that only worsens the pain. I'm fortunate to have a loving and supportive partner who understands and offers me her unwavering support, so I'm grateful for that 😀


I'm menstruating at the moment, and every month it seems to get harder, but I have faith it won't stay like this forever.


Thank you for being there Audrey and I do hope you're doing ok during these uncertain times.


Take gentle care,


Kel

Oh no! It's so hard to make that big decision and then to have everything postponed. Ugh. I agree, it's a real knock. The COVID situation feels so difficult right now, after feeling like things might be getting better. But you are so right, focusing on accepting what IS and recalling the things that are actually going ok are the mindfulness practices that can help us get through the day. I'm so glad that you have a supportive partner to help you stay grounded. Hugs to you both! -Audrey (endometriosis.net team)

thank you for your support it means a lot to me. This week I have good news to report - I started taking Visanne and it’s definitely helping with my Endo pain. There’s definitely some difficult side effects like hot flushes and palpitations to contend with which aren’t much fun but I’ve been assured they will subside. I feel lucky and grateful that this is helping me, especially in light of the delays we’re experiencing in the health care system right now. Ally, my partner is an RN working in ED so I get to hear first hand the immense strain they’re under. This has definitely afforded me a little more patience. Lol. I hope you’re keeping well during this challenging time and I’ll be sure to keep in touch as and when things progress 😀 thank you and gentle hugs

That is great news! I am so glad that you're feeling better! Hopefully the side effects will improve as your body gets used to the new hormonal situation. Please let us know how things go.
And do pass on my gratitude to your Ally for the front-line work--RNs are holding the planet together these days, and I'm so grateful to them for their expertise and care during these difficult times. Lots of love to you both,
-Audrey (endometriosis.net team)

thank you so much for all the support and love. I hope you’ve had a peaceful Easter. Since we last spoke, I’ve been continuing on with the Visanne. The surgery for a hysterectomy I had booked for March has now been postponed to May. Since then, I’ve seen a Pelvic Physio who’s given me some pelvic stretches and breathing exercises I’m finding to be really helpful. I’m going back there tomorrow for the internal examination. I also spoke to an Endo Support Nurse last week at the OGB clinic and she walked me through the risks of a hysterectomy- including the possibility of early menopause. This has scared me a bit and made me concerned as to whether surgery is the right path for me. I’m definitely still experiencing acute pain when my ovary is active and it seems to be linked mostly to bowel movement, and that is horrible. (It’s happening today) but since taking the Visanne, and since doing the daily pelvic stretches, I’ve found ive been able to be more active, take more walks and enjoy life more. So what I’m weighing up is whether to postpone surgery and just see how I am after a few more pelvic sessions and a little longer on the Visanne. It’s hard because everyone who’s had a hysterectomy is telling me it’s the best decision they ever made - but something is making me hesitant, but I’m also concerned if there’s something wrong with my left ovary and it is adhered that leaving it and not seeing what’s going on might causes further complications.


Anyway, I’m going to make a decision on Thursday.



Thanks for listening and if you’ve any insights id love to hear. Sending love x

I was recently published here in Australia for Endo Awareness Month if you wanted to read 😊

hi there warrior. So happy to hear you have found some things that do seem to be a bit helpful for you. I know the feeling of being nervous about having a hysterectomy and the side effects that come with it. I am in that boat of going back and forth with the pros and cons. I have heard many women say it was helpful for them, but there is also still the chance it won't be helpful and endometriosis can grow right back. I have an ovary that bothers me often too and I almost thought about maybe removing just that one ovary, to see if it helped with the pain, instead of removing everything. I know everyone is different so what works best for one person, may not be the best for another. So if something is making you hesitant, trust your gut. Maybe give what you are doing right now a few more months to really kick in and then circle back to the thought of surgery if nothing is improving. Or ask if maybe they can just remove that ovary and not everything <3 I wish there were easier options and choices for us! Just know we are here for you and support you no matter which decision you make. Sending you the biggest of hugs and all the good thoughts we can. Certainly keep us posted. And oh my goodness, congrats on being published. We would absolutely love to read! XO -Kimberli (team member)

thanks for your message. Removing the ovary isn’t an option as I only have one. I appreciate the your message and will wait to hear from Dr. Audrey. Thank you Kimberli x

https://www.sbs.com.au/topics/voices/health/article/2022/02/17/living-endometriosis-forced-me-slow-down


Here’s the article I wrote

your words are beautiful, and it was so nicely written. Thank you for sharing this with us <3 -Kimberli (team member)

that’s so kind of you to say - thank you Kimberli 😊 it’s definitely helped my friends and family really understand how my life are changed and the journey we take when we get an Endo diagnosis 😊 wishing you a peaceful week x


Ps: perhaps I should write something on here? 😀

of course! And I agree, I feel like a lot of my family members including my significant other, had a better understanding once they read some of my writings about how I was feeling/what was going on. And I always share other stories and it helps them get a deeper understanding of just what this horrible illness is all about. So, thank you truly for sharing your story. You don't realize how many others you are helping as well just by sharing <3 Wishing you a peaceful week and weekend ahead dear warrior. xox


Ps. YES! Definitely should share your story here: https://endometriosis.net/stories/new ❤

I love Brené Brown’s quote ‘owning our stories is the bravest thing we can do’ I think when we share the truth about living with Endo we become better connected to ourselves and that helps us stay better connected to those around us. Thank you for inspiring to continue to share my story. Wishing you a peaceful rest of your week xx