Not treating endo

[Fooofs91]

Hello. I haven’t been treating my endo for almost 9 months now . To be completely honest I feel like hormone therapy such as the pill made my symptoms far worse . It aggravated my bowels and just increased my pain . When i came off the pills I felt so much better and I manage my pain through diet gluten and dairy free . When I get the monthly pain ( usually 2 weeks or more ) I take pain killers . I was wondering should I be treating my endo . Are there risks ? Does it spread ? I never had these Questioned answered by doctors nwfore as they do not know if it does spread . Any suggestions xxx

[Luci20]

Hi I am also concerned about my endo spreading. I cannot tolerate the contraceptive pill and really don’t want to try the coil or induced menopause but I am worried about it spreading if I don’t do anything. I think it can spread but everyone is different so I guess they can’t say for certain as it may spread for some but may not for everyone.

[Fooofs91 in reply to Luci20]

Yes I agreee!!! All I have ever been told is manage it or it will spread it’s terrifying I need some answers ;( I can not tolerate the pill it makes my symptoms so much worse especially my bladder endo effects me so much more when I’m on the cp and I don’t want to try the coil either ♥️♥️♥️♥️ I hope we get answers soon for the now I will just go natural xxxx

[ChloeL934]

Hi,

I’ve never treated my endo, I didn’t know I had it at first, until I started getting pain, I went for some scans which showed I had a endometroima which was 2cm and then the pain just went away, and I don’t really have pain only on my period.

However I was suppose to have surgery this month to remove the cyst to help with fertility x

[Fooofs91 in reply to ChloeL934]

This is very reassuring thank you ♥️♥️♥️ I hope it’s the case for me . I know mine slowly grew back on my bowel ( that doesn’t count for the severe pain I have ) but I don’t want it to spread to other parts of my pelvis xxxx

[Afrohair]

My story is the same my specialist told me only a lap treats endo pills are to manage pain

[Fooofs91 in reply to Afrohair]

That’s exactly what I was told :/ I would love to know if it spread so I know it will have to be managed I feel so much better without the pills ♥️♥️♥️ Sending love

[Afrohair in reply to Fooofs91]

The only thing what decreases the amount is a laparoscopy it’s not essential unless trying for a baby or awful pain .if pain is manageable I wouldn’t recommend a lap you can take progesterone in form of cream aswell you don’t need to take progesterone only pill a lot of people think it’s just for fertility but if you have endo you can sure take it .it also suppose to shrink endo x

[Fooofs91 in reply to Afrohair]

Wow thank you so much for this I am going to ask my gp for progesterone cream xx

[Afrohair in reply to Fooofs91]

They may not prescribe it I had to buy it online they do not believe in it but I tried it myself x

[Afrohair in reply to Fooofs91]

healthunlocked.com/endometr...

[Afrohair in reply to Fooofs91]

Here’s my post on what vitamins to take and why it’s based on facts which I’ve read up about myself x

[mrskiki]

Mine was never treated as it wasn't diagnosed until late on, during an operation. I used to get serious pains for about 2 weeks at a time too. I'm not sure, if I had been diagnosed earlier I would have wanted to go through continuous endo surgery I see women endure from quite a young age, on this forum. ... but it would have been great to have had a diagnosis and perhaps some monitoring to understand if it was, like you say, spreading and treatment was needed. I think mine spread a bit over the years but I have no idea how much.

[Fooofs91 in reply to mrskiki]

I completely agree with you !!! I have so many in answered questions , all I hear is it effects fertility if you don’t manage it. It’s so frightening but I feel so much better without the pills ♥️♥️♥️♥️

[Anastasia17]

Same here. Late diagnosis, GPs delayed my care for as long as they could... since lap 18 months ago, left to cope solo. What has really helped me is the support I have received from fellow endo warriors and, on their advice, putting myself on an exclusion diet. It has reduced the pain, and the associated IBS consequences. The pain has not completely gone , but it helps. I also take supplements and vitamins.

However, I feel that my IBS got much worst last year and that it has spread higher as I can physically feel it.

Stay safe.

[Fooofs91 in reply to Anastasia17]

I am exactly the same !!! I have really had bowel symptoms every month too and although I’m dairy and gluten free I still get pain I’m just so afraid of it spreading ♥️♥️♥️♥️♥️

[Anastasia17 in reply to Fooofs91]

It is scary and I find, in my case anyway I don't want to talk for everyone else, the complete disregard, contempt towards women's healthcare by GPs and the gynae who was supposed to sort out my medical issues very shocking. All I got was 'for endometriosis, there is nothing to be done'. These were the exact words from the GP 16 months ago following endo diagnosis by lap. Repeated a 2nd time by the nurse practitioner 3 weeks later and who added on too of it that for interstitial cystitis, NOTHING CAN BE DONE, for the perimenopause, VERY LITTLE CAN BE DONE as you have a history of breast cancer in the family. The feeling of being abandoned by the medical profession is complete. I do wonder what I am doing on this planet at times because these are not the set of values that I was brought up on. However, I am fighting. Are you currently under any medical care? Do you have any treatment ongoing? What do you do to reduce /stop this spreading? 😥😘😘

[remita]

Hello,

I was diagnosed with endo after I went to the doctor with infertility problems. I had my cysts removed (one in each ovary). I didn’t have much time to think about it, the doctor said the cysts could rupture any time and harm my ovaries. So there was no choice for me. I had the surgery and then I thought that I could get pregnant. I was happy and free... BUT the next day after the surgery the doctor informed me that I had to have a long term treatment with 2 3-month shots (induced menopause). It was horrible at first because I was depressed dealing with the situation. Now 7 months later I’m fine and waiting for my period to start again. I don’t regret it, because I couldn’t get pregnant. The doctor says that the cysts may never come back, but there is a chance that they will. The endo is still not treated completely.

So to answer your question, there are risks if you don’t get it treated. Endo causes infertility and surely it doesn’t go away on its own. And you should consider the future.

Wish you the best!

[Afrohair in reply to remita]

I don’t want to be negative towards your post but why didn’t have all of your endo treated only the cysts ?the injection Dosent always get rid of endo it’s for the pain so that treatment Dosent sound effective they should of excised all the lesions that’s 7 month you could have been trying for a baby why wasn’t you advised to try straight after surgery you still don’t know if it was effective as you’ve not tried for a baby yet I do hope you get pregnant straight away!good luck and sending you baby dust xx

[remita in reply to Afrohair]

Thank you for your wishes!!!

I was clean and didn’t have any lesions. They told me the shots are a standard procedure for a better result after the laparoscopy. It happened so fast (the diagnosis and laparoscopy) and I was shocked. I didn’t know anything about endo before that, so I discussed it with my husband and my father (he is a doctor) and we followed the plan.

If I have found this website earlier maybe my choice would be different!

But now time has passed and I feel super ready to get pregnant! Also after the shots they told me that I’ll be super fertile! Lets hope!

Wish you well!

[Afrohair in reply to remita]

Remember that any treatment you have is your choice !the injection will just stop your periods and any existing endo growing therefore there was no need for you to be on it other than possibly 3 months to heal .I hope your periods come back in time as lots of people have waited months for their periods to come back afterwards you should have been told the pros and cons of this treatment and it Dosent sound like you have but I really hope it works in your favour good luck I always have lots of information on my page if you want to follow x

[remita in reply to Afrohair]

Thank you! 😊