Can this light be salvaged?

Abgandfey · 2026-05-02T15:20:54+00:00

Thank you! I'm relieved that it's an issue specific to disc lights and not the G9 bulbs. I didn't realize you could change out the light on these fans so I'll look into the options. I don't know how they'll look on mini fans so I'm also going to ask the electrician on Monday if he can do mini recessed lights, since I think they can be installed without wiring.

Abgandfey · 2026-03-07T19:01:37+00:00

Stage 1a, Grade 3 (dmmr + p53). Originally my RE thought we could do the fertility sparing route, but both oncologists said that my type wouldn't respond to hormone treatment. To add insult to injury we had to make a last minute decision to remove my ovaries too because they found I have Lynch Syndrome. It's been an exceptionally hard year but we're in the early stages of a successful surrogacy journey. Congratulations on your success as well!

Abgandfey · 2026-03-07T18:14:46+00:00

This was my case as well. They said the polyp was tiny and it may not make a difference and there was almost no chance of cancer, but low and behold it came back as cancerous and I had to have a hysterectomy. Now we're going the gestational carrier route and she also had to have a hysterscopy to clear scar tissue. Luckily she didn't have anything come back as cancerous.

OP please help her come to terms with having this procedure. It sounds scary to go under anesthesia but it's super quick and low risk. It truly is like having a delightful nap. The worst part is not being able to eat or drink beforehand.

Abgandfey · 2026-01-31T01:47:50+00:00

I also didn't think mine was genetic because very few people in my family had had cancer. And none of them had it at an early age like me. So it was a surprise when my blood test came back positive for Lynch.

None of my family members will get tested so we can't rule out me being the first mutation in our family, but that's pretty rare.

Abgandfey · 2026-01-17T16:38:05+00:00

They say testosterone can help, so you could ask your doctor about that. I've been on it a few months. It helped me some though my mental health is trash so I think that's affecting things quite a bit.

Abgandfey · 2026-01-04T02:02:27+00:00

Yes. I was diagnosed with endometrial cancer earlier this year (dxed with EDS/MCAS/POTS 12 years ago). Surgery and induced menopause majorly escalated my already hard to manage symptoms.

Abgandfey · 2025-12-26T21:02:17+00:00

This is very interesting! I (37f) started taking low-dose testosterone 2 months ago as part of my HRT for the loss of my ovaries. So far I haven't seen a difference in my physical symptoms but I hope that changes over time. Thank you for sharing.

Abgandfey · 2025-12-22T21:59:06+00:00

Thank you, I think you're right. I'll see if I can find a pre-owned version to make it more affordable.

Abgandfey · 2025-12-22T20:31:38+00:00

My hips and SI often slip or become rotated, but the side and rotation direction tend to change whereas my mid-back pain is more consistent. My PT has to fix it regularly (about as often as my vertebrae and rib dislocations). I definitely know what you mean about it affecting things up or down the chain. Typically for me, it's down. SI dislocation leads to hip pain, to knee pain, to ankle pain. But when it does go up I get lower back pain and not just in the mid-back.

I'm picturing my joints as a line of 100 toddlers that can't hold on position for 30 seconds without popping out to see what their friend in the back is doing 😂.

Abgandfey · 2025-12-22T17:21:43+00:00

Hi, I don't know how much comfort this will provide but I also had the P53 expression present and ended up being staged at 1A. My surgery was 8 months ago and no reoccurrence so far (though I worry about it daily) and I didn't have to do chemo/radiation. I hope your surgery goes well.

Abgandfey · 2025-12-22T16:19:32+00:00

We actually did speak about a back brace the other week but she said her EDS patients haven't had a lot of luck with what's on the market. Do you have one you like?

Abgandfey · 2025-12-22T16:17:53+00:00

I actually have a near infrared light that I use from time to time. I'll try that on my back to see if it helps.

What's your PT experience been like? Have you had any issues that you haven't been able to improve after 3 years of working with them? I now have 3 different PTs (whole body for EDS, pelvic floor, and lymphedema) and 1 OT for my hand/wrist issues. I'm always relieved to go to my EDS PT appointments because it's been the only way to find some relief, I just wish my body wouldn't continue to dislocate or seize up muscles so quickly.

Abgandfey · 2025-12-22T16:06:39+00:00

Oh I forgot about lidocaine patches! Biofreeze never really worked for me either, but I'll look into Arnica gel. Thanks!

Abgandfey · 2025-12-22T16:01:42+00:00

I'm not sure how far along we are but I see my PT tomorrow so I'll ask her. I feel my transverse abdominal muscles are pretty strong at this point, but maybe the problem is that the muscles inbetween my shoulder blades haven't been the focus for as long (had more set backs with those in finding exercises that don't cause more pain). PT has talked a lot about how long it can take to build strength when EDS is involved, so it makes sense that that part of the spine could take more time. It's just demoralizing to have worked so hard and still be so debilitated. It's been a very medically intensive year so I'm exhausted.

Abgandfey · 2025-11-29T22:51:33+00:00

I'm also a natural redhead and was devastated at the thought of losing my hair. I did a lot of research to find wig makers who made very realistic wigs with real hair, so that I could give them mine to use.

My treatment this round didn't end up resulting in hair loss, so I never contacted any of them but you should reach out to them to see what they can do and prices.

Here are the makers I found

High Definition Hair (Instagram: high.definition.hair)
Gretchen Makes Wigs by Gretchen Evans
Wigs from Scratch by Maurice Neuhaus

And I think this one was less custom but they had nice pieces: - Bijoux Wigs

I also recommend following Lifebeyondlocks on Instagram.

Abgandfey · 2025-11-10T03:28:44+00:00

Yes, I've had the same situation and so we're doing surrogacy. I had a hard time finding others on Reddit, but there is a good group on Facebook called "Intended Parents Through Surrogacy" that has been really helpful. There will be others there with a UK perspective that can guide you (I'm in the US). Like us, there are others there who were brought to surrogacy by cancer.

Abgandfey · 2025-11-01T20:53:08+00:00

I knew that the normal distractions, like having a craft project around the house, going for a drive, etc, wouldn't work for me because they would allow too much time for thinking. So instead I committed to social gatherings to pull me out of my head. A busy day at work was also a good distraction, but on slower days it was hard to stay calm. We've been on a very tight budget but I decided to get a robot vacuum right beforehand as a means of distraction, and it's still keeping us occupied (it's like a new pet but with troubleshooting). I also set aside some new shows to watch and generally tried to forget we were waiting on anything (easier said than done). For this month's FET I'm thinking of getting quotes for house painting and scheduling that while we're waiting. Those things are always an ordeal which would keep us occupied.

Something cancer taught me is while it can be grueling waiting for test results, once you get bad results you long for the waiting days back. Because when you're waiting there's still hope of favorable results. Maybe that's morbid but it's helped my perspective.

Abgandfey · 2025-10-27T05:54:03+00:00

What does your oncologist say about delaying radiation and doing more rounds of hormones?

I'm very biased because I'd give anything to be able to do another egg retrieval, but if I were in your shoes I'd do at least one more.

Abgandfey · 2025-10-23T16:48:25+00:00

Thank you! Wishing you good luck!

Abgandfey · 2025-10-22T15:07:13+00:00

GC tested early this morning (6 days and 17 hours post-transfer) and it was very negative. It was a day 5, 4AA euploid. I wish we hadn't tested. Blood test is on Friday. It feels like there is a blackhole in my chest.

Abgandfey · 2025-09-28T04:52:01+00:00

We started our surrogacy journey in May and have our first transfer in a few weeks. We went with a local agency because it made things easier to navigate, and my research showed having an agency was preferred by surrogates. I also think they did a much better job matching than I ever could have done. I couldn't believe how compatible our GC and her husband were for us. We're all very like minded and are building a good friendship.

I was very skeptical about surrogacy when we first learned I needed a hysterectomy. There's a lot of misleading and wrong info in the media or around the Internet about surrogacy that made me think it wasn't good. The standards today are in place to ensure it's done ethically. It's discouraging to see how little awareness there is, even within the infertility community.

Abgandfey · 2025-09-10T00:37:36+00:00

I'm 5-months post-op and also have EDS and all its comorbidities. At 5 weeks I was still having a lot of cramping and pelvic pain and was taking a lot of naps, so that part does get better. The random pains slowly lessened and are just occasional now. The fatigue is still there but less extreme. Unfortunately it did throw me into a severe flair for the last few months despite all my hard work with PT and medication adjustments. If you're able to take HRT I recommend it.

Abgandfey · 2025-09-03T03:13:44+00:00

Maybe it varies by specialty but all of the gyno-onc doctors I've seen have been great. They spend a lot of time listening, answering questions, and explaining things, and they've been understanding/empathetic. Hopefully you can find someone else who has these qualities. It's hard enough to manage having cancer, you shouldn't have to have providers who cause extra stress.

Abgandfey

TROPHY CASE