Scared

[Jade2000]

I can’t sleep because I’m scared. I keep having nightmares of what is going to happen to my future. I’m constantly on medication that makes me sleepy and I don’t want to be like this for the rest of my life. I’m petrified and I’m only 20. I live with my partner and he supports me in every way possible, Taking me to the toilet when I can barely move out of bed. Is this going to be my life ☹️

Everybody I speak to doesn’t believe how much pain I’m in. Some people look at me and say it’s all in my head.

The only thing I’m looking forward to is my operation, I really hope that helps.

[Kelseylilyx]

I know how u feel I’m constantly put on medication after medication in and out of hospital and doctors because I’m in agony all the time

[Jade2000 in reply to Kelseylilyx]

Feels like I can’t live without the meds. In and out of hospital is the same for me it’s terrible. I hope your okay x

[Kelseylilyx in reply to Jade2000]

I know it’s honestly the worst

[Nicjane]

Hey there! Im 22 and i totally understand how you feel. My problem is that the doctor wont give me any pain meds at all. But i want you to know tht you are nkt alone i always make jokes "i be in my prime once im 30" and hopefully live like I'm 20. Hopefully there be more advancements in science, new resesrch and treatments. Getting a "cute" medcine bag, and having something comforting like a pillow or blanket to bring out when you flare may give you a small sense of control and comfort.

I always try to have self care days when I hurt (kinda means everyday) haha. Even if its a nice film or a box of chocolates or a bowl of fruit small things are big for us with endo. My partner doesnt live eith me but we been rogether for 6 and a half years he seen me in all shapes i aleays give him an extra tight hug because hes my rock and I'm happy you have someone who supports you!😊 i tried some cbt to help me come to terms with my diagnosis. Feel free to pm at anytime. I relate since we around same age, good luck, hope you having a good rest.

[Jade2000 in reply to Nicjane]

I just want it all to be over, all that’s going on in my head is just get a hysterectomy. I’m just done with the pain and the stress of it all x

[Nicjane in reply to Jade2000]

Totally understandable unfortunately hysterectomy doesnt give a cure. But i have instances of feeling that way aswell. Keep your head held high you get through it! X

[Noodle1984]

I’m so sorry you’re dealing with all of this. It isn’t easy waking up every day knowing what you’re going to face or how you’re going to feel. I have endometriosis and 16 other chronic conditions including adenomyosis and fibroids.

Are you currently on some sort of contraceptive? 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.

There are a few things you can do for yourself 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. You got this! Just keep hanging in there, it will get easier. 💕

[Bubble_by in reply to Noodle1984]

I second this completely - I was hesitant about seeing a pelvic floor physio as I didn't think it would help, but it's been an utter game hanger for me. I also didn't want to start the combined pill but that has helped loads with my periods and they are a lot less painful now.

[Noodle1984 in reply to Bubble_by]

Sadly there just isn’t enough known about this disease. So until they know more we have to just keep trying things. I figure if you just keep throwing stuff at it somethings bound to stick 🤣🙈. When you have as many medical problems as I do you either have to find a solution or not. That choice is up to the individual person. I refuse to let my medical problems define who I am. They are a large part of my life but I’m also an artist and a momma to two pups, a wife and a business owner.

[JulesUK]

Is this your first operation? When is it scheduled for? What treatment have you been on other than medication? There are options other than tablets to help you.

[Jade2000 in reply to JulesUK]

Hi I am still waiting for a date to come through, I am going to ring my gynaecologists secretary today to see how much help I can get. I am on the depo injection. I’ve had the implant and the pill neither of them helped they actually made me worse. I don’t think birth control is for me. I have tried exercising, tried to have a different diet and I have drank herbal tea. No help at all. Just seems to be like contractions all the time

[JulesUK in reply to Jade2000]

I hope you get a date soon. The pill didn’t work for me either and the zoladex helped at the time but as soon as I stopped the endo came back (although it was some help whilst on it) I’m currently using the merina coil and it is the only thing that has made a major difference to my pain and bleeding. I hope you feel better soon and get the help you need.

[Catlover3]

My daughter has stage 4 endometriosis along with other conditions and she has found that an electric massager has helped tremendously with the pain. It has helped her to practically stop using painkillers. Hope you find something that works.