Signs of Hormone Imbalance in IVF and Cancer
(Or how western medicine failed me and how I figured things out after failing through all my problems.)
The more I talk to people the more I feel that hormones are running or ruining a lot of lives out there. Modern medicine seems intent on fixing the problems (and causing others) instead of finding the solution. I had a variety of problems and knew they weren’t spontaneously popping up but had a root cause. I finally feel like I have a grip on what’s happening 7 years after the fact, and now it’s too late for me to have kids. Hopefully, by putting this information out there someone else will benefit from my hindsight and avoid cancer or find themselves pregnant. My core issue is low progesterone/estrogen dominance.
What was probably happening Hormonally
- I tried birth control for the first time. Birth control is a hormone. Anytime you start messing with hormones you can start messing things up.
- I was stressed out.
- My hormones were getting out of balance.
- Low progesterone meant I wasn’t ovulating. If you’re not ovulating this very well could be the culprit. My doctors eventually recommended www.progesterall.com.
- The lack of progesterone which caused an excess of estrogen- that was probably causing infertility, weight gain (especially around the stomach), the hyperplasia and the cancer. Most of this I discovered in a book called “The Gottfried protocol”, by Sara Gottfried. If things are going weird with your system I highly recommend this book. It talks about the various hormone problems and how to correct them naturally. Reading the chapter on low progesterone/high estrogen was like reading a biography.
- Since I was taking Megestrol and a Marina IUD I was essentially getting more progesterone in heavy doses. So this was messing my body up in other ways.
- IVF added a whole new level of hormone crazy on top of what I already had. I was taking estrogen and progesterone in even higher doses than the average ivf patient.
- My thyroid was also getting messed up (which is part of the low progesterone/high estrogen story.)
- Then of course the pre-cancer coming back- also part of that hormone story.
- I was told to lose weight while they gave me drugs that are also given to people to gain weight.
- Having extra estrogen makes you gain weight because it’s stored in the fat cells.
- Thankfully my surgery left the ovaries so at least my body can produce some but I have to say after surgery when they go into shock for a bit I didn’t have estrogen and felt fantastic. I had been crying for months and the two weeks after surgery I was rock solid.
- 2 weeks after I started getting weepy again and no longer had hot flashes. Which meant the estrogen was coming back.
- We started doing hormone repair with my aunt and her doctor in Holland.
- I started eating lots of eggs, broccoli, bone broth, and salads. I cut sugars, skipped meals sometimes, and started a keto diet with as many vegetables as I could fit in. I also tried to do everything naturally and hormone free.
- I took a lot of vitamins. Here are their instructions: vitamin B complex 50 mg (prefer an active form), Vitamin D 3 400 IU times 4, Fishoil ( on daily base Epa 1000 mg and DHA 750 mg ), Magnesium Citrate 2x 200 mg, Calcium D- Glucarat 500 mg x 3, Glutazyme (which is an enzyme complex) 3x a day, half an hour before meal it should inclue; Pancreatine, Lipase, Amylase, Protease, L-Glutamine, Bromelaine, Papaine, ) Each different brand may have a different composition but it is important that the pancreasenzymen are in it. Dr Lee progesterone crème from America.
Choline 2x 400 mg. Folic acid (not sure how much), and DIM.
- I went to Holland and took a test (which I failed on a few different levels). This was about resources, energy, outlook etc and how they’ve changed. This was a good indication of how bad the hormone balance was. I also got some hormones tested.
- I got the results back on that and surprise, surprise I’m prime for endometrial (and other) cancers. From what I understand there are good and bad estrogens and most tests only test for estrogen as a whole. I’m high in the bad kind – which I think are ok during pregnancy since it’s essentially a tumor and it allows tumor growth. But it’s not really great at other times. I feel like earlier in the year my levels would have been worse.
- Thankfully I feel like they’ve improved a lot. My hair is staying in my head, my skin is more like it once was (I actually have to wash my hair every day or it gets oily), and my mood is naturally more upbeat. I’m constantly surprised at how good of a mood I’m in. And FINALLY I can lose some weight. It was never for lack of trying before, but now it actually works.
- They recommend this test (it’s commonly called a breast cancer test) twice a year. If you have hormone imbalances I would highly recommend this test. It will tell you if you have too much of the good kind of estrogen (which stops being good) or if you have the bad kind, or if you’re fine. I hear progesterone is harder to test. I plan on taking this one next time. truehealthlabs.com
- For my specific bad estrogen problem, they recommended the DIM supplement and Vitam b complex.
The Rough Story
About 6-7 years ago I first noticed things were changing that defied explanation. Gaining weight while dieting was the first symptom I took seriously. Along with that I’d have itchy legs and skin, my hair started falling, my skin (which has always been oily) became dry, I got moodier- sadder, and most concerningly I’d have my period for two months at a time and then skip a month. One year it went for 8 (full) months off and on. There were many more subtle symptoms leading up to this and maybe they had been going on longer. In general, if you’re not ovulating the lining is probably building up and you’ll start skipping periods and then having them lightly for a very long time. I believe this can be a sign of the hyperplasia. My first bad doctor said it was fairly common- it is not. Don’t let this go too long.
In addition (and not surprisingly), pregnancy just wasn’t happening and about a year in, I started seeing an ob/gyn. The doctor basically told me she had to follow certain steps that insurance covered regardless of if she thought they would work for me. We tried Clomid (until I maxed out the time limit), metformin (in case I had PCOS) which they didn’t think I had (and I didn’t). She also gave me an endometrial biopsy. She failed to tell me I had Complex hyperplasia with Atypia or even get me a good sample. Between drawn out appointments, testing medications for a few months we spent about 3 years on this. Her next step would have been artificial insemination and cost about $850.
Pre-cancer and IVF
So we saw an ivf specialist in Portland. This didn’t go very far because she recommended another biopsy (as I said-the first was a bad sample). This was the point I got a call from my doctor telling me I had stage 1 endometrial cancer.
I went to a specialist in Seattle at Virginia Mason (Amy Brockmeyer who was wonderful) and she said I didn’t quite have cancer. Although out of women with this pre-cancer condition (Complex Hyper-plasia with Atypia) 40-60% have cancer, they just can’t biopsy everything to accurately tell. I was rolling the dice hoping to have kids by trying hormone therapies instead of surgery which is what they really wanted me to do.
We began hormone treatments (Megestrol) to treat the pre-cancer/cancer. It was grueling for about 6-9 months. We did this to buy some time so that we could try IVF (which she recommended as the only options since I didn’t have much time left.) The Megestrol treatment was supposed to reverse the hyper plasia. However it didn’t seem to work. Then they told me I could have Mirena IUD which is a targeted treatment instead of systemic. So no side effects – which would have been nice to know earlier. This worked like a charm and without crazy side effects! 3 months later I was free to spend a fortune trying IVF.
My body produced follicles but struggled to get enough eggs. I think they harvested 8 eggs. 5 made it to the embryo stage. At that the odds were we’d probably end up with 1-2 valid embryos based on those numbers. We chose to do a biopsy on the embryos and found out that 3 did not have genetic abnormalities that would make them likely to abort. So 70% chance success rate. Which meant 3 tries. We were thrilled. We found out they were all males.
We ended up doing 3 rounds and spent 35-40K ish and that was with a “cancer” discount from Live strong on medication. The medication is super expensive and I don’t think they include it in their quotes.
I also started having hypothyroid condition. Or at least for IVF. They like you around 1.5 and I was at 3.9. In America they average out the thyroid levels for an “ideal” which I think we can all agree is off (4). That includes everyone with really bad thyroid levels. If you exclude them the averages are more around 2.5. Other countries work with lower numbers. As soon as I went on this medication I felt so much better. I had no idea how fuzzy headed I had become. I was tired, and my hair felt like straw and came out in handfuls. I thought all of this were the results of IVF but it was my hormones getting more out of whack. I was again frustrated that I felt so much better on thyroid treatments and would not normally have qualified for it by American standards.
I miscarried at least once after getting sick. Apparently, this is a common reason for miscarriages in the first trimester (another reason not to spread your virus people!). The second round I went through all the treatments and hospital appointments but my lining wasn’t thick enough and failed right before implant. We struggled with lining issues all 3 rounds. By this point I was taking more medications and hormones than the average IVF patient. I was injecting 1.5″ needles of progesterone even while trying to implant or being pregnant.
This is important because apparently there hadn’t been any studies on endometrial cancer and or hyperplasia (both have to do with the lining). Clearly they were connected. My body failed to respond to the medications well enough to work. So we didn’t make it to the implant part round 2.
Third time failed and by that point, I started getting symptoms for…
I started having month long periods. My skin started getting itchy and on a month when I was starting isagenix shakes and pretty much drinking a few hundred calories a day I gained 20lbs. Yes in a month. I knew it was back and was devastated. So when I went for another biopsy and found out I was right. Incidentally, I gained more weight when my pre-cancer condition was unchecked than when it was being treated with Megestrol (which is what they also gave to anorexic women to gain weight.) Although I gained with that too.
Again I was told it didn’t quite look like cancer but again I had a 40-60% chance of having undiagnosed cancer for the second time. The odds were no longer in my favor. Additionally, my ivf doctors didn’t know what else to do. They wanted to try the next round without medications but I had done that for 6 years without success so I wasn’t optimistic.
I was also having weird things happen like around day 14 of my “cycle” (whatever that was at that point). I had extreme heart palpitations. I did a little research and put in hormones and heart palpitations. I found low progesterone on day 14 could throw your heart out of wack. I took some progesterone and my heart was fine.
At this point we gave up. Clearly having our own kids wasn’t in the cards so we opted for a hysterectomy. We were really worried about cancer. Since it was such a short amount of time I had to go back on the Megestrol. So for another 3 months I was on a soul-sucking dosage of medication again trying to fight the cancer/precancer. Then I had surgery.
Honestly- the surgery was a relatively easy for me compared the everything else I had been through. It wasn’t nearly as painful as I expected and although most people really suffer with their energy levels post-surgery, mine felt pretty good. The megestrol had been worse for my energy levels then post surgery.
The biopsy said I was negative for cancer so that was a blessing. Additionally, I had adenomyosis which had gone undiscovered and would have caused a lot more pain. Surgery was the only solution for that too so I guess it would have been inevitable. I had, had stabbing pain for years that was fast and really random that might have been cysts bursting.
My greatest sorrow of this whole misadventure was that we have one embryo left and no likely surrogate (any takers?). This has been the cause (by far) of the most tears out of the whole misadventure.
All along I had been trying to fix things naturally but felt like I didn’t have time for natural options as much as I would have rather gone that route.
It turns out my amazing Aunt in Holland (Monica and her doctor Anne-Mieke) works with women to naturally help hormones for fertility and menopause. So we started (too late for me) trying to balance my hormones. However this could prevent other cancers for me and in general improve just about everything so it’s still worthwhile. I’ve been doing this for about 6 months. They did a written test to evaluate how I’ve changed in disposition and resources. I failed that. Then a urine test to see if I was too high in various estrogens. I was high in 12 bad estrogens that are known for causing tumors and different cancers include endometrial. In the details to the left, you’ll see I started a regime of eating very specifically for my hormones. They include vitamins and foods that should help me recover and I already feel tons better. For this bad estrogen problem, they really recommended DIM and B vitamins.
It makes me think anyone with large changes should take these tests to see how they rank. Your regular doctor will not give you this. I tried to have all my doctors do this and none of them would. I could have found out that I was ready for cancer a while ago with this test but only got it after we cut the pre-cancer out.
Finally – I’m surprised about how happy and more resilient I feel. My skin is better, my hair is staying in my head, and I’m FINALLY able to lose some weight. This took about 4-6 months of doing these things to finally feel better. I have to imagine that my trip to Europe helped too (: One of the things they focus on is lack of stress, increased sleep, breathing exercises and even cold showers! Again more details on the vitamins etc to the left.
Good luck! Listen to your body.
Unsolicited thoughts & opinions
A few years of this treatment I think my shame left me. It’s stunning how much money I spent to be poked and prodded by a variety of doctors. All of this was highly uncomfortable.
My doctor literally told me, we don’t need a good biopsy sample because…”I’m so young I probably don’t have cancer.” And depending on who you as that may or may not be true, but that was definitely the fight. I quit this doctor. There should be a rule somewhere that doctors can’t say this. Her name is Dr. McCulough. We constantly felt like she wasn’t proactive or really worried. I really had to prod her for next steps.
I got told at work that I can cancer. It was a new job and I managed to make it out the door without tears. Then they had one more thing to tell me and called me back and I just had to leave in tears without telling them what happened.
Megestrol was horrible. I was tired, weak and had all the symptoms of menopause. I had horrible hot flashes. I was pretty much done with the day by 3pm. It makes you gain weight. They give it to aids patients and anorexic girls to gain weight. But they’d like you to lose some weight too because that could help!
Endometrial cancer means lots of biopsies of your lady bits. This is pretty much the worst. Apparently according to my dr. notes I have a good pain tolerance.
The advice on losing weight from doctors was endlessly frustrating. Yeah, I am eating salads and you know what? I’m not sitting around eating oreos all day. I felt constantly judged. If you could just lose some weight maybe you’d be able to have a child. But hey- here’s some anorexia meds, and extra doses of fat causing estrogen. They really didn’t believe gaining weight was one of my symptoms but it was proven over and over.
The stories about IVF are too long and painful to go into but here are some highlights. I got a 2′ x 1’bag full of needles – no joke. Most of them were 1.5″ long. I had to take a lot more medications than the average IVF gal because they were’t working. I cried when I got that bag. I thought there was no way I could possibly need all of those. I got that bag 3 times.
Everytime I had my lining checked (maybe 15 times?) it was an hour long as they checked each follicle, painfully and carefully with a vaginal ultra sound. I always dreamed about my first ultra sounds. This was not it, even though my tech was amazing. I had to buy myself chocolate after – every single time. I felt like I should have a punch card for these. They were $300 a pop. Turns out the doctor did the order wrong. I only needed a 5 minute lining test all of those times. ): I asked about it 3x to make sure before she recinded that order.
Did I mention multiple daily shots? But there were also pills, patches and other things — that went other places. The patches were like $45 a piece.
My husband does not like feelings or needles. I had to do this on my own. But you have to put it in your side, in the but muscles. Then you have to draw back to make sure there’s no air which is hard to do without moving it around inside A LOT. THe progesterone was like toothpaste and hurt for up to 2 months. My husband got the dtap shot the other day and complained for a week. I tried really really hard to look sympathetic. At least my fear of needles is gone.
I cried a lot. My estrogen was at ridiculous levels. I’m not a crier and – I was spent. No resources left. Especially when I was on megestrol and was super tired about around 3.
I got told by old men on mothers day that I was pregnant when they were handing out chocolate to all the ladies. He insisted I was. I left crying. I was going through ivf and knew I was large around the stomach area.
I got asked if I was pregnant or just letting myself go. Also left crying.
I miscarried and cried for a few weeks.
I failed a pregancy after IVF which kind of has all the expectations of miscarriage (there’s a 70% chance of success) That also felt like a miscarriage and may have been one.
I got told I was going to have the due date of my grandfathers 100th birthday. They would have been exactly 100 years apart. Thankfully I forgot the day of his party. But sure, that made me cry some more.
The 2-3 months after the second precancer diagnosis I cried a lot. I think my hormones were so confused by that point. Everything was happening. Thyroid issues, miscarriages, ivf treatments, cancer treatments and impending hysterectomy. I cried for like 2-3 months straight. Mostly for the last 1 embryo that was still on ice and the thought that was I was letting it down.
Writing that I cried again.
My husband is a complete saint. I tried (unsuccessfully) to not to cry around him….
I had nurses cry for me when they found out I’d be getting a hysterectomy after everything we went through- and then we cried together and the doctor came in and felt super uncomfortable. That made me feel better.
Cancer/precancer cost me another 10k. We’ve been super lucky to be able to do this all without debt. Mike’s boss I think gave him a bonus in part just for this whole misadventure so that really helped and we were so grateful.
It’s possible we’ll adopt and spend another 25k so we’re not out of the woods. I fully expect the next stage of adoption or foster to be equally as hard and painful.
I was so grateful to work from home through all this. People were really accommodating.
Additionally, we’ve tried doing foster through this at least getting certified. That process is horribly long and they just fill you with bad scenarios. I did their classes while going through my treatments and felt like a zombie.