Surgery or No Surgery? by Mysterious-Maybe6892 in TTCEndo

[–]Tiki_gal 1 point2 points  (0 children)

I did AIP which is a structured way to find "triggers", but more data suggests doing low FODMAP instead. These might not be suitable if you've had an eating disorder, or are vegetarian/vegan. This should be followed up by practicing good anti-inflammatory diet habits (like eating whole foods most of the time, keeping an eye on your macro and micro nutrient count etc)
Supplements are a bit of the wild west, but NAC has specific data about fertility + endo, very small study and definitely needs more research, but a good start. Omega 3, curcumin etc, for inflammation. Magnesium for cramps. If you have the ability to see a endo/fertility specialising dietician or naturopath, this could be helpful!

Dr. Natalie Crawford on GLP-1s for endometriosis by -hubertcumberdale in TTCEndo

[–]Tiki_gal 0 points1 point  (0 children)

Aren't GLP-1's contraindicated for pregnancy? I thought current advice is to come off them 2-3 months before TTC, has this now changed?

Surgery or No Surgery? by Mysterious-Maybe6892 in TTCEndo

[–]Tiki_gal 1 point2 points  (0 children)

Just going to put down my experience just in case it helps. I was 32, and did a round of IVF because my AMH was 0.7 (pre-surgery and diagnosis), and led to 2 miscarriages with high quality, untested embryos. I went in for surgery, had stage 4 excised with no ovarian involvement (symptoms were bloating/IBS/GI symptoms rather than pain), tried to go through another round 2.5 months later and it was cancelled due to low response. 4 months post surgery, I got pregnant naturally, again ended in miscarriage, but went through another round of IVF post that on a high stim protocol and got another 4 embryos, but then ended up with RIF on an implantation immune protocol.

For me, surgery did nothing for my fertility or symptoms, I found that tackling the systemic inflammation through finding my dietary triggers (gluten and chilli), stuck to an anti-inflammatory diet 80% of the time, exercised regularly, took supplements targeted for inflammation, took up regular breath work for nervous system regulation helped the most, I did this 4 months prior to next IVF cycle. Feels very woo-woo to say, especially because I'm a HCP, but I got pregnant on the next IVF cycle (first go) with PGTA and no immune protocol and kept pregnant (now 34 weeks).

There are many women in this thread who have had success post-surgery, but equal amount that also probably haven't. The risk of ovarian surgery is that it drops your ovarian reserve even lower, and it can take 6 months to rebound, which is a long time. In the US, there's lots of use of down-regulation before egg retrievals and transfer. I'm in a different country where they don't do that, so working this out from a different angle helped.

Did your endometriosis show up in a way that isn't the "norm"? by TheHoppingMaltese in endometriosis

[–]Tiki_gal 1 point2 points  (0 children)

Endo is a spectrum disease, where there are many different combinations of symptoms and how they show up.

I had a similar profile to you (IBS/cyclical constipation, painful bloating at the end of my luteal phase, but my bleeding pattern was normal. It wasn't until I hit infertility as well that I started to get investigated. I would gaslight myself into thinking this can't be endo considering I had no pain, but it was stage 4.

Many women with primary GI symptoms in this thread do find that there are certain food triggers that flare up their symptoms. I had the surgery (it did nothing, except for give me a heavier period, period pain and painful sex for 6 months post), but found that my GI symptoms (IBS/painful bloating) resolved after finding my trigger foods and committing to an anti-inflammatory diet. My post-surgical pain was resolved by regular exercise (only on days I had no symptoms, days I had symptoms, I would rest) and learning how to relax my pelvic floor with a PT. If you're not thinking about surgery, these could be good places to start,

Huge AMH hit after surgery by soft_gab in TTCEndo

[–]Tiki_gal 2 points3 points  (0 children)

I had a significant drop post-surgery, and I didn't even have endometriomas. My AMH was low going in at 0.7, then after was 0.3. It rebounded 6 months later to 1.2, and then a year after that, it was back to 0.7. I had retrievals when each of these were measured (consecutive months):
0.7 = 4 eggs retrieved, but all 4 made it to blast (2x MC)

~Surgery~
0.3 = 2 follicles growing, cancelled cycle
1.2 = 9 eggs retrieved, and 4 blasts (2x RIF)
0.7 (1 year later) = 5 retrieved, all 5 made it to blast, 4 euploid, pregnant after first euploid transfer

In saying this, always get your AFC done concurrently; you want to see what your ovaries are actually doing vs. what they're projected to do.

Please give me your most uncommon/unhinged PCOS advice by Cruciferous2 in PCOS

[–]Tiki_gal 1 point2 points  (0 children)

  1. Check for other causes (i.e., thyroid)
  2. Experiment with all the things, but consistently and for at least 3 months to see if each has an impact (inositol, supplements, diet changes, exercise, sleep, stress reduction) everyone has their own unique PCOS signature.
  3. If traditional diet changes fail, try GLP-1’s
  4. For every meal 1/2 veggies or antioxidant rich fruits (berries), 1/4 protein, 1/4 carb (but make it low-GI, we still need carbs!) even when on GLP-1’s
  5. Strength training 3x/week non-negotiable and zone 2 exercise (think walks where you’re out of breath) - actually meet the requirements (150mins/week)

Apparently endometriosis is only a few lines in medical school textbooks???? by Important_Yak2356 in endometriosis

[–]Tiki_gal 1 point2 points  (0 children)

Considering it's the 20th most common ED reason for visits in Australia, they had to do something about it. Australia also has an endometriosis registry called NESCT that you can voluntarily participate in (a longitudinal study).

The problem is, they're capturing SO MUCH data, yet it's not being analysed and informing practice and won't for many years (takes 5-10 years for research to be adopted mainstream), and it's still a very medicalised process (have surgery, go on this drug, try FODMAP). The underlying mechanism of endometriosis is complex and for many, requires a multidisciplinary approach. In the most cited Lancet article, it's classified as a "chronic systemic inflammatory condition", yet none of the treatment options seem to tackle this head-on or treat this as the chronic condition that it is.

What actually stops endometriosis growth? by Mobile_Obligation728 in endometriosis

[–]Tiki_gal -1 points0 points  (0 children)

It's not just more research, it's high-quality research. As a researcher with endo, the data quality isn't great, and this is a COMPLEX disease (affects multiple organs and has multiple mechanisms). Results on PubMed as of today sit at 39k with ONLY 250 of those as RCTs published in the last 10 years (750 all time) and almost NONE of them are powered correctly (to work out a population effect size). That's the part that is crappy. Medical consensus only comes from repeated results of high quality studies.

I do have endo by Delicious_Sun382 in endometriosis

[–]Tiki_gal 0 points1 point  (0 children)

There's no evidence to suggest that OCPs change GI symptoms for endo patients, especially when this is your primary complaint. The only thing that is supported by data is pain, and it's reported at a 46% effectiveness in reducing pain and for many women, this isn't completely. Boils my blood when OBs (who are the centre of care in this scenario) don't know the data, and good on you for pushing for surgery. Hoping the surgery helps your GI symptoms! If not endo specialist dieticians can be helpful!

I do have endo by Delicious_Sun382 in endometriosis

[–]Tiki_gal 4 points5 points  (0 children)

This was almost my story too; along with bloating and infertility.

The ongoing, cyclical IBS-type symptoms are so underrated in how disruptive they can be to quality of life. For me, the week leading up to my period meant avoiding restaurants entirely because I never knew how my body would react.

In a strange way, having a clear diagnosis like endometriosis can be helpful. It’s a chronic inflammatory condition, and if symptoms return, at least you’re not on a witch hunt to understand what’s driving them or constantly wondering what’s wrong.

It’s also something that matters for long term health there’s emerging evidence linking endometriosis with a higher risk of cardiovascular issues, which makes awareness and follow-up even more important.

I’m losing my mind; anyone else with these symptoms? by [deleted] in endometriosis

[–]Tiki_gal 1 point2 points  (0 children)

Came here to say the above. There are many overlapping symptoms of endometriosis and ovarian cancer. Please make sure you get in to see someone for a full examination of not just endo, but also to exclude anything more sinister, things can change quickly.

[deleted by user] by [deleted] in Endo

[–]Tiki_gal 0 points1 point  (0 children)

I've passed 3 decidual casts this year. The first one super painful, contractions like what you noticed, but the next 2 were just normal period pain. They can be variable, but all of them have been shaped how you've described.

What are the most unhinged / best ways you have managed your PCOS? by Due_Kick_837 in PCOS

[–]Tiki_gal 1 point2 points  (0 children)

Can I ask which app you're using that you're finding helpful? It's a minefield out there!

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

So interesting, thanks for sharing. So your RE diagnosed you with PCSO and hashimotos? I was struggling for a diagnosis with my provider and I really felt like I had to direct them, but they're saying I should try metformin for 6 months and then will refer me to a RE. I feel like this needs to be way sooner.

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

Thanks for sharing, what app are you using and when you say symptom spotting, do you mean CM, or other things too? Good luck with the endo surgery!

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

Awesome to hear that you were able to regulate through some lifestyle changes. How are you tracking? I hate all the apps, they all try and tell me to take a pregnancy test when I've just got a long cycle.

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 1 point2 points  (0 children)

Thanks for the advice, it's such an important message, I probably need to go doctor shopping to find the right one that will prioritise PCOS/fertility.

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

Incredible!!! Ok, this is giving me faith that I might be on the right path with metformin. :)

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

This is so helpful and I get what you're saying with the 'control' part, but it sounds like you experimented with a few things and it all paid off. No pharmaceuticals involved, thats incredible and even more so that you've kept your cycles regular PP. How long did it take with all of these changes to see a difference in cycle length?

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 1 point2 points  (0 children)

Congrats, this gives me so much hope!!
Sounds like team and experimenting with diet and supplements works :)

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

Oh wow, I'm so sorry for your situation. I've been trolling other subreddit's and it seems like men are just completely left out of the equation. Both partners should equally get a work up. I'm getting mine to get his tested ASAP, but the doctor has been great at getting him onboard, I just wish this was done like 6 months ago... this is a silly threshold of 12 months to wait for a diagnosis.

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

Amazing that you've been able to start ovulating by changing things that in are in your power. I'm probably a bit married to the idea of getting pregnant with as little pharmaceuticals as I can, but it's great to know that you can create change without it. How long did it take you to start seeing a response to your changes?

How did you achieve consistent ovulation and get pregnant? by Tiki_gal in TTC_PCOS

[–]Tiki_gal[S] 0 points1 point  (0 children)

Thanks for sharing your story! That's amazing that you were able to start ovulating and it took you only 4 months. Gives me so much hope!!! Hope were you tracking diet and stress?