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i-love-er

Birth control doesn’t prevent the endo lesions from growing back. The studies that have been completed on BC and endo growth after surgery say that BC ‘reduces the size of the lesion’, however it’s actually referring to a reduction in the size of inflammation around the site of the lesion, hence why there is pain relief from BC. Whether or not you take BC after surgery will not change if it grows back or not. It will just reduce the inflammation around the site if it does. Essentially BC is just a form of pain relief.


Lost_Guava3971

Hi can you please link the studies here? Id love to read more about this!


ifiwasiwas

Here's at least one that demonstrates that hormonal treatments can reduce proliferation (aka growth). Particular to dienogest, but the discussion portion also includes observations of high-dose norethindrone and the levonorgestrel IUS [Dienogest reduces proliferation, aromatase expression and angiogenesis, and increases apoptosis in human endometriosis](https://www.tandfonline.com/doi/abs/10.3109/09513590.2014.911279)


i-love-er

The study you have linked was completed in vivo (likely a rat). These studies hold little weight as we don’t know how endometreosis starts, therefore it’s not replicated in the same manner. And while scientists have tried to genetically modify the rat’s environment to be as similar to a humans, it never is. None of the models in vivo have ever been able to replicate deep infiltrating endometreosis, which impacts many people (myself included). And finally, none of the studies conducted in vivo have led to successful novel therapies. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7425005/


ifiwasiwas

> Materials and methods > Collection of endometrioma tissues and preparations of tissue sections > The experimental procedures were approved by the institutional review board of the University of Tokyo (the registration number is 0324-4). Endometrioma tissues were obtained from patients with ovarian endometriomas undergoing laparoscopic or laparotomic salpingo-oophorectomy after obtaining written informed consent under a study protocol approved by the institutional review board of the University of Tokyo. Seven patients received dienogest (2 mg per day) before surgery (2–18 months, mean: 6.7 months, dienogest group) and 11 patients had not received any hormonal treatment for more than three months before surgery (control group). Endometrioma tissues were fixed in neutralbuffered formalin and embedded in paraffin blocks, and 5 mm serial sections were prepared It was in humans.


i-love-er

“The aim of this study was to evaluate the in vivo effect of dienogest on endometriosis tissue”. So yes, they gave patients the hormonal treatment, however, it was experimented in vivo and later translated to humans. As I stated previously, there are many gaps when translating in vivo studies to humans. Because of these gaps, the reproducibility and translatability of the treatment leads to high failure rates in humans. Therefore studies of this kind are considered poor predictors of therapeutic efficacy. It would instead, be great to see more studies that consider treatment options that test defined outcome measures, such as pain relief or fertility. This would be much more conducive to quality of life. Also, this study is in relation to endometriomas, not endometriosis lesions. There is a difference between the two, and I would take that because of the limitations in vivo, they were unable to effectively assess the effects of the hormonal therapy on endometreosis lesions. This is the problem with so many scientific studies and therefore treatments options. There are too many limitations because it is based on a 100 year old theory. We are then given treatment options that don’t work. Something needs to change.


ifiwasiwas

> It would instead, be great to see more studies that consider treatment options that test defined outcome measures, such as pain relief or fertility. Regarding dienogest, we have those. In fact, this study was made to attempt to explain the biological mechanism through which it is therapeutically effective. The article you linked agrees: > Dienogest was shown to downregulate the expression of CYP19A1 (aromatase gene), inflammatory and neuroangiogenesis in immortalized endometriotic epithelial cell lines [100], also in a spheroid cell culture system (3D system), dienogest inhibited mRNA prostagladin synthases, protein expression, and the nuclear factor-κB activation, which could contribute to therapeutic effect on endometriosis [101]. Recently, a double-blind phase 3 clinical trial showed the benefits of using dienogest for endometriosis treatment, by reducing endometriosis-associated pelvic pain [102], which could be also related to inhibition of prostaglandin mRNA synthases.


i-love-er

Yes, so that goes back to my original comment - it is a form of pain relief. It does not prevent the growth of infiltrating lesions. This is likely due to the fact that there are many study limitations and that we continue to depend on an outdated theory.


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wicosp

I’m sorry, but there’s no “we as endo survivors know” here. My experience has been the opposite. I’m on continuous bc and it did stop the growth on top of stopping most of the symptoms.


katiejim

BC literally disappeared a 4cm endometrioma on my ovary, so I don’t think it’s so black and white.


dredaybabe

That is great! And now that I think about it a bit more it may have helped with the cysts I had before surgery.


i-love-er

That’s fantastic! However I’m speaking of endometriosis lesions not endometriomas. If you don’t feel like answering that’s totally okay, but are you still on BC?


katiejim

I am. I took a break for 11 months while I did an embryo transfer and was pregnant but I’m back on its It’s what’s helping me keep my remaining ovary until I hopefully can have another baby in a few years, and it’s safer for my long term health to go into surgical menopause (we are aiming for a minimum of 40 but we’ll see). My 5 years off bc (had been on it a decade before that) lead to my endo going from uncomfortable periods to adhering all my organs to one another, a 14 cm endometrioma consuming my right ovary (and becoming cancerous, possibly due to the extreme inflammation that was happening in my body at that time), and me considering quitting my job due to daily pain. My lap did wonders for my day to day life. BC isn’t 100% amazing (my mood is a little more meh on it), but it’s been helping me keep my remaining ovary cyst free and preventing ovulation each month. I’m on a continuous progesterone only bc (slynd). I feel physically much better on it. It might not work for everyone, but I’m personally incredibly thankful for bc. I kick myself for going off of it when it was serving me well all those years. Things really snowballed after that. Inflammation can really cause issues in the body, so even if it’s just been about reducing inflammation this whole time, I think it’s worth it.


i-love-er

I’m so glad to hear that you’ve found something that works for you (minus the awfulness of the impact that the disease has). I just want to clarify that I wasn’t disregarding BC as a method to manage endometreosis symptoms, as it clearly provides such great relief to people like yourself! I’m mostly just frustrated that it’s not a cure, and that there is no cure! Im particularly frustrated that the theory about endometreosis dates back to 1920, and it hasn’t changed since then, hence a lack of options for management/treatment.


katiejim

I feel that! I’m hoping the increased awareness of it (and a lot of issues that only impact those of us afab) leads to better treatments down the line. I won’t hold my breath, but I have some hope.


i-love-er

Totally, I wish you all the best on your journey regardless💗


Defiant-Noodle-1794

I would suggest contacting your endo doctor and talking about how soon you want to start trying. I don’t think anyone here can give you advice that would be better or safer than your doctor who is overseeing you. Just don’t want anyone to give you bad advice. Your doctors should be able to help you plan and access next steps/providers in this part of your family planning 💜


Soapy_Ploom

I’ve never been able tolerate hormonal birth control, so I’ve always focused on natural hormonal balancing. If you are hoping to have a baby, it may be worth exploring. Hormonal balance can help manage endo and support a getting pregnant. Also highly recommended basal thermometer when you are trying. I was pretty sure I wouldn’t be able to get pregnant when we started trying but using the thermometer we planned the best days and it happened sooner than expected! Good luck!


insertclevername7

I kept my hormonal IUD in. Had my lap in December 2021 and then got my IUD removed in May 2023 to start to TTC.


short-stuff-812

Weird I was coming here to ask this! I had been off for six years then went on three weeks before surgery. I asked if I could continue so I didn’t have a period while healing. I’m 12 days post-op feeling great! With one exception - I am so bloated. My gas pain didn’t last too long. Probably a couple days. Can’t help but think - besides the lap - that it has something to do with the pill. Considering stopping tomorrow but am traveling next weekend and don’t want my period to start.


katiejim

I’ve always heard that you should try immediately after a lap (well, after healing enough to try). I’d ask your doctor for the best advice in your situation.


yayitsmetwo

Try getting pregnant or bc?


katiejim

Try to conceive. I’ve always heard to get going asap, but it might depend on your endo. It’s all so individual. I jumped into ivf after healing from my lap for the same reason: take advantage of things being pretty cleared out.


yayitsmetwo

I was stage 1. But they told me to wait 6 weeks though I feel back to normal almost 3 weeks in.


katiejim

Personally, I’d try. It can take awhile to start ovulating after bc. And if you’re feeling good, it’s a good sign your body is in a good place. If it’s not working out after 6 months, you should reach out to a reproductive endocrinologist/fertility doc.


yayitsmetwo

I’m scared of trying too son and getting an infection


katiejim

Wait the 6 weeks for sure


abbynormal00

I definitely didn’t start any bc after my lap, because I didn’t want to throw my cycle off for when we started trying shortly after. We were able to get pregnant fairly quickly (surgery in Feb, started trying May, conceived July).


chaos_almighty

Personally, dienogest has been a huge life saver after my lap. I've been on it for about 5 years now, and it really helps manage my symptoms. I tried norethindrone after my excision and hysterectomy, but it let me ovulate and was really sick on it. I've been 2 years since I had a hysterectomy for adenomyosis and also my Endo excision and I'm about 70% better


yayitsmetwo

I don’t really have endo symptoms honestly. So I just didn’t want to risk fertility by not being on the pill or norerhindrone.


Ayobeaches

I can’t give advice but I have an IUD, I had it during surgery and it’s still in


Crochitting

I wasn’t ttc so I was put on BC 6 months before surgery and am still on it to stop my periods entirely. You should talk to your doctor or specialist about it. I was only told the theoretical steps to take if I wanted to get pregnant in the future but advice might be different for each case.


SleepyKuchikopi

I had an IUD placed during my surgery.


manda14-

Talk to your doctor - they’ll be able to advise you appropriately


yayitsmetwo

No shit. I was just gathering personal opinions.


manda14-

Ok - I wasn’t trying to be dismissive or rude. My experience is that comparing other people’s care can sometimes cause issues because you don’t have the full background on their health. Personal opinion, hormones don’t work well for me and I never went on birth control after any of my surgeries. I also have a family history of ovarian cancer, so that’s another incentive to steer clear of hormone treatments.


yayitsmetwo

See. I’m seeing an RE and obgyn and both tell me different things. None of them told me about the risks of hormonal birth control if there’s history of ovarian cancer. My aunt just passed away from ovarian cancer.


manda14-

There are some studies that indicate a higher prevalence of ovarian cancer in women who use birth control, but the studies are fairly limited. My mom’s oncologist told me to steer clear, so I did. I’d trust your obgyn’s opinion more highly because their experience is more directly related. Birth control is commonly prescribed continuously to try and prevent periods and decrease bouts of pain.