follow up, went to the doctor
So, I went to my appointment with the gynecologist. I told her I thought I was dealing with endometriosis and listed off my symptoms.
She agreed that I did have many of the classical symptoms and wanted to do a sonogram (told me that it would not be able to identify endo but wanted a look).
She saw a 3cm (1,18 inch) knot on my uterus which she said was also an indicator that I might have endo. She also said that my uterus had a large top half which can also lead to more bleeding.
No I am not on contraceptives and have not been on the pill for several years (my husband had a vasectomy). As a first step she wanted me to go on a pill called Cerazette because I have had negative effects from the double hormone pill. She also recommended a IUS but I want to wait with that and see if this works.
She did not mention a laparoscopy but was very sympathetic. I asked it the pill might alleviate most most of the symptoms and she said it should at least lessen/stop the bleeding and the pain - following that the fatigue should become much less or disappear. However, that leaves the bloating and constipation - don't know how that can be addressed.
What is your opinion of her advice?
It sounds like you're taking control of your health, and I applaud you for that! While I can't give you medical advice, I'll offer my opinion. According to all the endometriosis experts I've spoken to, it's reasonable to try hormonal birth control to ease symptoms. And studies show progestin-only pills (like Cerazette) do help lessen bleeding and cramps with some people. There's also some evidence that the Mirena IUD may be a good option for treating endometriosis pain and bleeding for some people. Here's an article about that in case you find it helpful: https://endometriosis.net/clinical/iud
With that said, hormonal medication with progestin and/or estrogen doesn't work for everyone. It's also not going to diagnose your endometriosis or treat it. Personally, progestin-only pills weren't a good fit for me and weren't able to control my bleeding or stop my periods.
As for the bloating and constipation, those symptoms continued for me even after surgery. What helped the most was pelvic floor therapy (which is something you can ask your doctor about even if they don't want to do surgery yet) and dietary changes, including going gluten-free, vegan, and low-FODMAP. Here's a bit more about my experience with diet changes and constipation: https://endometriosis.net/living/diet-changes ; https://endometriosis.net/living/low-fodmap-1 ; https://endometriosis.net/living/pms-constipation
https://endometriosis.net/living/symptoms-experiencesI definitely think you should bring up your bloating and constipation concerns with your doctor. They might suggest you meet with a dietitian or GI doctor to explore any other causes of your symptoms. And you can always get a second opinion about surgery from another doctor if you feel that's something you'd like to pursue right now. And please let me know if you have any other questions and I'll be happy to help if I can! - Keri (endometriosis.net team member)
proud of you for taking charge of your health. That is not an easy thing to do. It does sound like you have a caring doctor too who is willing to help you. Like Keri mentioned, I can't offer medical advice but I will share my personal experience with you. I found any type of hormones/birth control to mask my symptoms and not truly get to the root cause. I also had negative side effects being on the pill. Maybe it was because I have been on it since 15, but it just didn't seem to help with really anything. But, I have also come across SO many women who have truly found it to be helpful for them. So it doesn't hurt to give it a try if that is something you are wanting to do.
I will say, my first 2 surgeries were helpful. My last two, not so much. BUT at the same time, they kind of were helpful because they removed other things I didn't know I had going on that were causing a lot of pain, hernias, polys, fibroids. So for me, the surgeries were worth it in that sense. So if your current doctor isn't willing to do the surgery, it never hurts to get a 2nd, 3rd, even 4th opinion. As exhausting as that may be!
Again, like Keri- I am in Pelvic Floor PT as well. And so far, think it actually be the most helpful for me. Diet change worked for a long while, and now has stopped again. But I do think I have some sort of gut issue like SIBO or something going on. But I have done the AIP and LOWFODMAP diet and have been able to find some foods I feel I could handle. That is definitely something to look into. A nutritionist would be most helpful and also a GI doctor if you have not seen one yet. To rule out anything GI related for the constipation/bloating.
I will say for my constipation, I take magnesium at night, it's a powder that I just put in some hot water and drink like a tea. It's called CALM. And it really helps with my bowel movements. My doctor told me it is a natural/safe supplement to take rather than constantly using a laxative. Of course, talk with your doctor before using the CALM. But it is one of my favorites.
I do hope you are able to get relief. Please keep us posted and do reach out if you have questions or just want to chat. Here for you. -Kimberli (team member)
