Living with endometriosis

[Jcwy]

Hi,my name is Jessie. I'm 33 years old. My husband and I have been together for 16 years. We have been blessed with 4 beautiful children. I've been living with endo for at least 18 years. Of course I didn't know this until I was about 23 years old . That was the first time I had ever heard of it. Previously through my teen years I had been back and forth to drs and hospitals and was always told it was a " bad period ". I was put on birth control at 15. I stopped taking it at 17. I guess because I was just tired of it (and being a rebellious teen😕) I guess it must of helped with the symptoms (again didn't know anything about endo) well fast forward... the years of double periods a month, excruciating pain, depression, headaches,back aches,leg pain, chest pain,ibs,constantly having to go to the bathroom the list goes on,i finally decided to have the surgery. It has not helped me in the least bit. If anything I think it came back and worse. I had stage 3..so I have no idea what could be happening now.

[gemmah6]

Hi Jessie sorry to hear that you are not feeling great. Did you have the endo excised? Was it done at a BGSE Centre? I had mine done last year and the surgeon told me that she had gotten rid of it all, as I chose not to have any hormone treatment - mirena coil, she did say that it might come back later. I have also read that with some people on here have not had it done at a BGSE centre and it has returned too. x

[Jcwy in reply to gemmah6]

Hi. Thank you for your reply. I live in the U.S. I'm starting the process of finding a specialist. I've been with my ob for the past 12 years and the past 3 years or so he has changed. (That's a whole other story!) Yes, they excised and also used laser vaporization. They told my husband about 45 minutes to an hour and I was in the o.r for over 2 hours. They said I had stage 3...and I definitely feel like it may have come back. I as well did not have any implant . I do not do well with any hormone therapy treatment. My hormones are crazy as it is. I have no one that knows what I'm going through. From my experience people especially woman want to up you in the pain department or with anything. It's like everything is a competition! Do you have that experience?

[GrittyReads in reply to Jcwy]

I would read everything you can on this site and also any posts on here by Lindle - and link to her Facebook page. As things are different in the US, you need to read up on 'best practice' as steps such as 'exactly' how the removal is done, has a big impact on whether endo grows back or not. Also, the Mirena coil can be helpful, as it is progesterone only, and opposes the oestrogen that causes a lot of the trouble.

[Jcwy in reply to GrittyReads]

Thank you for your reply! Our health care system sucks big time..it's all about the $ . I feel there is a cure for everything and our government won't release them. Maybe I'm being paranoid I don't know. It took a good 10+ years before I knew what endo was! I'd been to drs and hospitals with never an answer for anything.

[gemmah6 in reply to Jcwy]

I agree with the post below about reading up and finding out more because I have no idea how it works in the US! I decided against the Mirena coil because I didn't want anymore synthetic hormones in my body. I wanted to try and regulate normally, I have hormonal issues and although it's only progesterone and not oestrogen I just didn't want to do it. If it gets to a point where I feel my quality of life is worsening and the endo comes back then I will revisit my decision but at the minute am trying really hard to be 'natural' - whatever that means! 😂

It sounds like you have had a nightmare with everything, and I know what you mean about people not understanding. I think because there are different stages/levels of it it's hard to understand for people on the outside - I suppose it's another one of those - can't see it illnesses that people struggle to comprehend. This is why this forum is great, it means that people can share and help each other, and I was so relieved when I found it because I was at a loss - what with conflicting medical advice and then dr. Google! As for competition and one-up-man-ship I haven't experienced that with endo but have seen it with other things! I tend not to join in with it, I think it's interesting to watch though! 😂 Again that's why this forum is great, because everyone pulls together and reaches out because everyone has their own story and have had their own journey and know what it's like to feel a certain way about something or feel at a loss or going mad and just to have someone go through the same thing/similar just helps, I think. I hope you find some answers soon and get something sorted out, it's the worst part not knowing but kind of knowing if something is wrong. Hope it all works out fine and you get the answers soon x

[Jcwy in reply to gemmah6]

Thank you. So far in one day time I've gotten more support from people who are dealing with this then ever! I'm blessed to have my husband be my rock as well. Honestly I'm an American and don't even understand our health care! We give out free health care to immigrants who our illegal to our country but for our own citizens they get the shitter..been this way for to long! The hormones scare me so bad. That is the main reason I haven't had a hysterectomy. At one point about 9 years ago I had the implant in andit ended up falling into my cervix...oh my goodness I was in so much pain it was unbearable! I haven't had good luck with those thingsto say the least!