Endo and the contraception pill

[Jhedwards]

Hi everyone,

So now that I have been diagnosed with endo, I feel like I don’t want to take the pill anymore because I don’t want anything to get in the way of my fertility.

Has anyone else had the same thoughts or know whether it is bad for people with endo? I know it helps with pain management but I’m desperate to have children and don’t want anything to get in the way of that!

Any thoughts would be appreciated.

Thank you! Xx

[Hidden]

Hi Jessie,

Firstly, being diagnosed with endometriosis, as much as it sucks, is a good thing. I’m currently awaiting a laparoscopy next week to hopefully get some answers to my unexplained pain that I experience. The not knowing and non-diagnosis has driven me mad..

I was put on the progesterone only pill (mini pill) to manage my pain.. And it’s taken a very long time for my body to get used to it. I don’t know if the pill actually has done anything for me as I had another pain relapse at the beginning of the year, hence now the laparoscopy.. I’m still taking the pill.

Like yourself, more than anything I want to have children at some point, and I’m also worried about my fertility..

I just wanted you to know that you’re not on your own.. and I’m sure we’re not the only two who want the same answer. X

[Jhedwards in reply to Hidden]

Hiya,

Totally agree! The not knowing drove me crazy! I hope everything goes well in your laparoscopy.

Thanks so much for your reply. X

[Sagada]

Hi! I removed mirena coil in June, I had laporascopy in July, confirming stage 4 endometriosis. I refused to take any hormonal contraception and I hardly have any pain now, but I continue with Chinese medicine and accupuncture. In my case I had a whole lot of side effects and the pain was horrible before they removed ovarian cyst and endo. Even the doctor said I'm a weird case, because pills I used for 7 years and the coil was supposed to be the best solution and my side effects were weird too. It was a bit risky decision, but right now I feel much better than with it. Please remember though, it is a very difficult decision- what works perfectly fine for me, may be the worst solution for you. I'd suggest to find a doctor who listens and is open minded and then discuss if you should be off pills. Then you need to find something what not only stops the pain, but what daily helps to slow down the disease - in my case, it's the herbs, accupuncture, exercises, anti-inflammatory diet and a whole lot of changes in my life style (including changing the job) to minimalize the stress. I just knew that hormones were not for me anymore and the suggestion I got (to get a pill and get off it a month or two before getting pregnant would not most probably end up in a magic pregnancy).

[Jhedwards in reply to Sagada]

I have my follow up appointment on Thursday with my doctor so I will ask her what she suggests and then I will probably see my GP as well and see if they have my thoughts on it.

I’m not sure what stage I am yet as I wasn’t able to see the Doctor after I woke up but I was told they zapped it all out. Do you know if it’s likely to grow back? Especially if I don’t make changes to my diet etc?

Thank you so much for your reply x

[Sagada in reply to Jhedwards]

Dear, with endo you never know - you may be the lucky one and it will all settle down by itself, but you need to be aware it's a nasty disease which loves to grow back. I remember I felt so down, when the doctor told me -in my case - it is very likely it will be all back, the only question is when. It took me a lot of time to get adjusted to this, now I'm in a fighting mode and I'm doing everything I can do just have it under control.

[applebird]

Well if you want children right away definitely come off the pill!! Then it won’t get in the way of anything.

However if you plan on having children some time away being on the pill ironically is the best way of protecting your fertility.

The pill lessens the amount of endometriosis that grows. That is why it helps with pain it is kind of like weed killer for the disease if you know what I mean... Without it the endo can do more damage over time to not only your ovaries, tubes and womb but to your bladder, bowel etc. Endo grows like spider webs pulling and binding other tissue together (can pull Fallopian tubes out of alignment, adhesions on ovaries). Also every month leading up to your period period it grows crazy stimulated by oestrogen rising and then dies back as it drops little leaving scar tissue.

For some people the pill isn’t strong enough and they have to have an injectable hormone treatment (go to endo resolved website and read about treatment options). Most, if not ready to have kids, go in pill for a period of time and then have a laparoscopy to get rid of any endo that has grown despite being on pill if they can’t get preg after 6 months (if you have an endo diagnosis everything is fast tracked with regard to corrective surgery and ivf if you need it).

The pill will not damage your fertility, nor will the injections. It’s reversible. I was on the pill 16 yrs and two 6 month courses of prostap; I have a 2 yr old. The riskiest thing you can do if you have been diagnosed with endometriosis is to do nothing. Then the disease will progress unabated. X

[Jhedwards in reply to applebird]

That’s really interesting, I was not aware of this.

Thank you very much for that information, it’s very much appreciated! X

[DarrousL1 in reply to applebird]

I agree with you. I have been diagnosed with endo in April 2019 after my laparoscopy surgery. the surgery was first made because the doctor thought i had a cyst over my ovary, and during the surgery they found out that it was not a cyst and that i had endo (which explained a lot all the pain i used to have before and during the first day of my period). the doctor cleaned the area and prescribed me contraceptive pills to be taken daily so that i don't get my period at all (unless i want to have kids). it was shocking to me at the beginning, but then with a bit of research i found out that the pill is not harmful and there is no harm in me not getting my period for a long time. so i am on the pill since after my surgery. thankfully no more pain

[amy100]

if you want children asap then come off the pill but fertility usually returns to normal really quick when stopping the mini pill. theres not any other official meds when pregnant, simple pain relief but pregnancy is meant to be good for endo pain

[Jhedwards in reply to amy100]

Thanks Amy. Yes I have heard that pregnancy is good for endo pain, only one way to find out! Thanks for the reply x