Treatment for endometriosis if estrogen is not an option?

[Rae2020]

My daughter has been newly diagnosed with endometriosis. She is not keen on having the Mirena coil (initial recommendation) so the the doctor wanted to put her on the pill to stop progression but it transpired she cannot take it because of migraines and the associated risk. Now the doctor is saying she doesn't need to take anything because she is only a grade 1 or 2. She is really confused because she thought she needed to take something to stop it getting worse. Does taking progesterone only help reduce the condition progressing? Is anyone a grade 1 or 2 and is not taking any medication? She also has an ovarian cyst which she is waiting to have removed. Many thanks.

[LEH199]

Hey - I can't take certain pills either due to being medically diagnosed with migraines when I was young so I'm given the progestogen only pill which I imagine your daughter should also be able to take? It comes under several different brand names, cerazette, desogestrel etc. Might be worth going back to discuss? nhs.uk/conditions/contracep...

[Rae2020 in reply to LEH199]

Thank you for that. And do you find that it helps with pain and also slows the progression of the condition?

[LEH199 in reply to Rae2020]

You're welcome & Sadly not anymore with the pain.

When I was younger my periods were absolutely fine, 6 days a week, pretty much always 28 day cycle and only experienced what I'd refer to as the 'normal' dull achy period pain (nothing unmanageable).

When I was 20 I first started to notice a change but this was due to irregularity (plus IBS symptoms and the occasional back pain but didn't link the 3 together). And now it's only this year now that I'm 24, just shy of 25 that I've been in excruciating / debilitating pain and my bleeding is out of control.

Sorry long winded answer to your question but in answer to it, it could definitely have delayed my onset yes - I just can't be sure as I wasn't diagnosed when I began taking it.

Hope this helps!

[Rae2020 in reply to LEH199]

It’s all a bit hit and miss isn’t it. Daughter doesn’t want to take tablets unnecessarily and can manage the pain with other drugs, just not sure about it’s effect on slowing everything down. Sorry to hear things have deteriorated.

[Rebeccasalt in reply to LEH199]

I get migraines too so couldn't be on combined pill but I took desogestral (mini pill) for my endo and found it was the best at managing my symptoms. I tried a few different things but minipill helped most with the pain - i can't say it completely stopped it and I was fatigued a lot but compared to when I came off the pill to try for kids it was much better! I've had to have a second laparoscopy 4 years after diagnosis lap and my endo is stage 4 in my bowel now - but I think likely that without being on minipill I'd had have needed my second lap a lot sooner!

There's no easy answer to it! I don't think she should do nothing just because its only grade 1 or 2 because that suggests the pain correlates with the grade which from all the reading i have done is not the case. More factors need to be considered than just the grade.

I found diet and exercise did have an impact for me as well - I cut down alot on red meat and don't drink anymore. But this is variable for everyone I think!

Theres no easy answer sadly! Good luck working your way through it all!! Endo is such a journey!

[Rae2020 in reply to Rebeccasalt]

Thank you.

[Afrohair]

Contraception is very much forced on people because there is not enough knowledge or cure for the condition if your daughter wishes not to take contraception she dosent have to I spent a year researching my condition and what foods to eat which made me pain free I also used progesterone cream(advisable to do some research of your own before using )it Cohibits with your natural hormones do not harsh on the body

[Rae2020 in reply to Afrohair]

Will look into that, thanks.

[Noodle1984]

I’m so sorry she is dealing with all of this. She needs to get an appointment with a different gynecologist if he is not an Endo specialist. Sadly most gyn are not properly trained in the disease and in removing it. If it isn’t removed properly I can cause more issues and cause it to grow back in a matter of months.

Please don’t let this go on too long. I am 36 and was just diagnosed in February with stage 4 recto vaginal endometriosis. I have had painful periods for as long as I can remember. I even remember being a teenager (17 or 18) and when I went to emergency they gave me a pregnancy test and that was it. So I asked my doctor and she said painful periods were normal. And so began the journey of misinformation from doctors.

I also have 16 other chronic conditions including adenomyosis and fibroids. I say this because I have done a ton of research on my conditions and anything along the way I thought might also be going on lol.

Everyone hates this and wants a “natural” way but Endo isn’t that type of disease. I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. You don’t have to suffer, you don’t have to have a period either! I haven’t had one for over 3 years. You can only have so many surgeries before you’re left in permanent pain. Each surgery causes scar tissue and if there’s too much it causes you pain. Also in order to preserve fertility it is even more important.

Another factor is oestrogen. People with Endo tend to produce more of it and it’s what causes cancer. If she wants to figure out where her levels are currently at I would highly recommend looking into the Dutch test. It’s based out of the USA (I am in Canada) so I’m not sure about the logistics. It’s a dried urine sample and you do 5 of them over the course of 24 hours. So you get a nice read of what it does over the day. It’s way better than the single blood test they do. My hormones showed normal for the blood test but this is much more detailed and it found all my hormones are down in the dumps.

There are a few things she can do for herself now..

1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.

2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.

3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.

4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.

5. Keep a diary of your symptoms and what you were doing when it happened or what you were eating. Maybe you can figure out some of your triggers.

6. Make sure you’re seeing an Endo specialist. Do whatever you can, don’t find one that just has a special interest. Most general gyn don’t know much about the condition. They tend to only do ablation (basically removing them top and leave the root). Instead of the gold standard of excision where they remove the whole implant. I have read so many stories of woman either coming out and they find no Endo or are still in just as much pain.

Sorry about the novel! Please feel free to pm me if you have any questions. 💕

[Rae2020 in reply to Noodle1984]

Thank you for all that information....there’s a lot to digest here. We obviously need to do some more research!

[Anastasia17 in reply to Noodle1984]

From my own experience, I second everything that you say. I would add to request from GPS a blood test to check on anaemia/ iron levels, ask for ferritin levels to be checked, it should be at 70. Also a good quality vitamin D will help with tiredness and immune system, alongside magnesium glycenate that has the best absorption levels by the body and is gentle on the stomach. The anti inflammatory diet has a massive influence on pain, flare up, bloating. It is worth trying, it works for some of us. She should be under an endometriosis specialist centre, BSGE. x

[Brambledoggy]

I was in the same situation as your daughter with symptoms but didn’t get diagnosed till about 26 years old. I’m now 50 and have had various surgeries which didn’t get to the root of the problem and I still suffer badly. Read my profile if it helps, sorry it’s quite long but then I am quite old, ☺️ She needs to get fully educated about the condition now and ask all the right questions. Don’t be fobbed off by anyone. I won’t take hormones anymore. Migraines, stroke risk, family history etc. It’s just my opinion but the medical profession dish them out readily as a solution. IMO they just mask symptoms and delay matters. If your daughter can get treated early and remove all her endo whilst she’s young, she might stand a better chance for the long run. Doesn’t matter what stage you are, 1 or 4, it’s still debilitating and thrives on oestrogen. Hopefully my periods dry up and I get some relief after over 30 years of it. All the best. Nina