u/hot_pineapple9178

I had a continuous daily headache from February - April due the hormonal suppression I was on for stage 3 endometriosis (Norethindrone acetate). I knew I wasn’t neurologically tolerating it but my endo pain was 9/10 and I had surgery in March and wanted to be able to recover well.

Well, for all of May and June it’s been escalated to a daily continuous migraine. Even though my pelvis is doing way better I can’t go back to work and I’m completely nonfunctional. I’ve been on medical leave since December.

I stopped Norethindrone 3 weeks ago but the migraine still hasn’t stopped.

I’ve tried oral sumatriptan 100mg, nasal sumatriptan 20mg, nurtec, a 5-day dexamethasone taper, and nasal zavzpret. Oh and I’ve been on monthly emgality injections since January.

The next thing I just got prescribed is a 5-day DHE course.

The only thing that dulls the pain a tinyyyy bit sometimes is nasal lidocaine stacked with a bunch of gabapentin. I can’t take NSAIDs because they give me stomach ulcers.

I know you guys understand… I’m desperate and suffering. What ideas do you have?

Oh and fwiw I have a very healthy homemade Mediterranean diet and I’m as active as I can be despite the pain. I was smoking a little cannabis everyday post surgery for pain but I’ve stopped in case it’s a migraine trigger. Supplements include: magnesium glycinate, NAC, melatonin, fish oil, coQ10.

Edit:
Thank you so much for the responses and recommendations. Grateful for the community here ❤️‍🩹

I’d love to hear about the range of experiences of people who started TTC (for the first time) with endometriosis in their 30s.

How long did it take for you to get pregnant?

Did it work naturally or did you go to IVF?

Did you experience losses?

For context:
I have stage 3 endo (excised 3.5 months ago) and I plan to start TTC in 3 more months, which is when I turn 36. I already have some peri symptoms; e.g, ovulation happens early, on day 10 of my cycle. But before surgery my cycles were always very regular. I’m coming off 6 months of suppression now.

Fwiw I also have always had a healthy diet, have been moderately active, and so has my partner, and we don’t drink. We do smoke some cannabis though. 😬 (I use it for endo pain management.)

I know no one ever really knows, but I’m bracing for a hard time and wondering about my odds of this going smoothly (quickly)… help me understand?

I'm a US-based product manager in tech with 12 years of experience at startups and big companies and I'm building a solution for myself (and others, if interested). I'd love your feedback on whether this resonates:

One of the biggest issues I've faced on my endo diagnosis and treatment journey has been how I've seen so many providers and they have no good way of sharing and centralizing records.

• It's hard for me to prepare for new appointments without looking around several sources and compiling what's relevant for the new doc
• I accidentally leave things out because it's so much detail to keep track of
• My providers don't each have all the historical context they need to understand my patterns (and sometimes I miss them too!)

I think patients should own their own health data and share their complete record with any new provider as needed. Having a different part of my record at literally five different clinics has been so disempowering — can't I at least own my own health data?

If everything was in one place, including my own notes as well as doctor records, I could run analyses to actually detect patterns. For example:

• "You've missed at least one day of school/work every cycle for the last year. Period pain this severe is not normal — it's time to seek expert help."
• "You've mentioned a change in your gabapentin dose in proximity to the last 3 headaches you've reported, so the headaches probably aren't caused by your birth control."
• "In surgery your tubes were perfectly normal even though they appeared to have hydrosalpinx in your MRI — based on the dates in your record, the swelling on MRI must have been from having your period after your egg retrieval cycle and not real cause for concern."
• "You've reported level 5 cramps on cycles when you start taking ibuprofen 2 days before your period, whereas it gets to level 8 in cycles when you forget to take it early,"
• "You had ablation during your first surgery 2 years ago, no wonder you're already having debilitating pain again. Let's talk to your new specialist about excision this time."

So what if this product..?

1. Allowed you to upload PDFs or take pictures of paper records from medical providers
2. Let you add in your own narrative (maybe upload apple notes or voice notes or pictures of your journal; maybe it's just a simple weekly prompt to jot something down)
3. Maintained one complete source of truth for you to scan when needed
4. Prepared a concise summary you can give your provider at your next visit where the summary is tailored to the type of appointment and care provider specialty
5. Compiled the 5 most important questions you should get clarity on during your next visit so you can leave understanding your own health and next steps better

Would you use it?

Thanks for your time!

Hi friends, I’m looking for alternative options for stopping my period and minimizing the chance that my endo grows back.

Context: I’m 35 and I just had my first excision for stage 3 in early March, so I’m 8 weeks into recovery. My pain was so bad I was on medical leave from work during the four months I was on the waitlist for surgery. It was 6-9/10 pain on a daily basis, so needless to say I want to do what it takes to not get back to that point.

My surgery was with a world class specialist at UCSF and it seems like she did a thorough job with excision. But it was all over my pelvis, so I’m still worried about recurrence.

I’ve been on Norethindrone 5mg for 4 months and it’s great at blocking ovulation and my period, but I’m in a very hypo estrogen state and it’s causing daily/constant headache, hot flashes, fatigue, and massive depression.

The depression got a bit better when I added Wellbutrin and Prozac to the mix, but I still cannot with the headaches. I can’t get back to work and using the computer yet because of the headaches.

Based on my research, it sounds like norethindrone is pretty extreme in terms of suppression. It’s so effective because it reduces estrogen so much. But I’m not tolerating it well and I believe I’ll need to find a better compromise.

I know one option is to try adding back a very small amount of estrogen (like 0.5-1mg of Estrace) and keep norethindrone.

What other low estrogen / progesterone dominant BCs should I look into? I’m NOT open to an IUD.

I’m hoping that whatever I land on will be something I can take continuously for the next decade or so until I hit menopause. (My mom had early meno and I have extremely low AMH/ovarian reserve so I’m on track.)

Thanks for reading! I hope you’re having a functional, low-pain/pain-free day 💖

To anyone who’s had a good experience with tattoo removal in the city, please share your recommendations.

Extra context on how much you spent, how extensive your tattoos were (size, color, like thickness, shading), and how many sessions you had to do would be helpful.

Is it 100% gone? Did you do a different tattoo over it?

Thanks!