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endometriosis pain

Mar 18, 2016 5:07 AM

I am a 25 year old female.
I began my periods aged 9 and have always suffered really bad with them.
My first ovarian cyst to burst (that I know of) was when I was 15 and happened to occur the same day I needed my appendix out.
Again one burst when I was 18 and 20 on holidays with my family.
I became sexually active at 19 and up until 22 my sex life was all normal.
For the last 3 years sex is unbearable and my periods are non existent.
On December 6th 2015 I was rushed to hospital by ambulance at 5am with was then confirmed an ovarian torison as yet another cyst erupted.I was dosed up on morphine and sent home.
Again January 2016 a chocolate cyst erupted leading me to the E.R once more but again doped up and sent home.
I have been trying to get a gynae appointment but constantly ignored.
March 4th 2016 I was admitted with extremely pelvic pain ... AGAIN.
My pain scale is a solid 10 / 10 and honestly even morphine doesn't help.
I was told I have a large number of follicles and was promised a gynae appointment that I am STILL waiting for even though I'm pretty sure I warrant one at this stage.
My last period was January 29th 2016 which lasted 10 days and nothing since.
I have no quality of life like I should at 25.Some days I feel I'd be better of dead than living like this.
My GP thinks my thyroid has been affected and I am now awaiting blood results.

Has anyone else been constantly fobbed off like this?.I feel I've been forgotten about and completely let down by medical professionals ๐Ÿ˜ข

Mar 18, 2016 7:31 AM

Yes I have also dealt with issues all my life. I found a great gynecologist and she did emergency surgery in 2013 and took my Fallopian tubes out. They were so messed up that it caused me to never get pregnant. But since then I still have problems and now we have decided on doing a hysterectomy as soon as I get Medicaid. I also just found out I suffer from Sjรถgren's syndrome and it also affects stuff too. Next week is when I have my appointment with her again and I have to let her know about my Sjรถgren's syndrome and that they didn't want to say I have lupus also just yet. So the only way my doctor found that my tubes were messed up was through surgery where the take a camera and look in there thru your belly button. Cause all my tests would come back ok. Also I'm on a depo shot and it has stopped my bleeding a lot too. That might be something you want to ask about.

Mar 18, 2016 8:48 AM

Good morning,
Yes, it was also thought at one time that I did have endorsed but did laparoscopic surgery but nothing showed. Have had numerous ultrasounds since then but again, nothing showed up. I also have a wonderful gynecologist(could not ask for any better). At this point, scheduled to go back next Wednesday afternoon as I have been on my cycle since February 27th. Should have gone in sooner but got too much on my plate right now. Probably going to get fussed out for waiting so long. Also on oral Provera right now but might have to stop it in the near future. Can't do Depo either so going to have to figure something else out.

Mar 18, 2016 9:01 AM

I am currently on oral contraceptive pills also to stop ovulation and hopefully stop cysts from forming but I just bleed through them and still develop cysts so it's useless! My GP advised against Depo / IUD until after lapo surgery which the E.D agreed! Currently on Tramadol 50mg ร— 6 a day and also the usual over the counter pain relief.It's such a long horrible road!.I have no appetite but constantly look 5/6 months pregnant with the bloating and pressure!.Really beginning to lose faith / my patience!.

Mar 18, 2016 9:16 AM

C, I really do understand. My hand is out if you need it.

Mar 18, 2016 9:37 AM

I'm so sorry I know exactly what you are going thru. Mines has me on percocets for my pain. Praying for all of us!

Mar 22, 2016 11:15 AM

Hi CGxo,
You are not alone with these situations.
I have many issues. I believe that I need to be strong. Work out one thing at a time for me. I have chronic pain, fibro, lower back problems and mood disorder. I have been passed around or denied treatment, medication, the worst one was that I was drug seeking when I was in the emergency departments or needed to see a doctor other than my own. I have had horribly painful periods since they started. I am 47 now. I can not deal with the pain any longer. Through my life I have been on birth control, miscarriaged 4 times, gave up a birth to a baby that did not have a brain and very deformed, I have one live daughter who has challenges and now is having painful periods which at times she faints, I have had my second IUD in - this time not helping at all, hormone treatment, analgesic treatments that did not touch the pain, but made me higher than a kite, I have a growth that has been growing attached to my ovary for past three years, gyne is now involved. This is my second gyne doctor for second opinion because the first one said I would be a new person if I went gluten free. Yes I did start to poop on a regular schedule, never before. Then ion second appointment I was not a new person so she said you need to decide to deal with pain or total hysterectomy because she did not want to goes go in and confirm endometriosis and said might as well take it all out. One minute appointment. Then second gyne tried Narcotics and anti inflammatories. Did not work. She said no more heavy duty Narcotics and changed to Lupron, which I am not happy about being on. She said if it is endometriosis the Lupron will put my ovaries to sleep, causing them to stop producing estrogen which fuels endometriosis. My laparoscopic surgery is end of May when they will confirm endometriosis and remove abnormal growth and right ovary. They will burn any endometriosis, remove anything they need to, meaning that it may end up to be a total hysterectomy:(

You are very young. There are treatment options they may not be medical to deal with the pain. For example meditation, food that you eat, acupuncture, cognitive behavioural therapy. It all takes time ๐Ÿ˜ณ
The IUD was decided to be ok to do after I decided that I was no longer having children. I am very fortunate that with 6 pregnancies I was able to get one child. I am truly grateful! My husband did not want to adopt or foster kids. But in the mean time I felt I was pregnant and roller-coasting for seven years. That was horrible, especially knowing that there are so many kids needing to be loved and have a constant in there life. Life has not gone as I thought it would but I am fortunate to have my daughter.
Continue to educate yourself. Your pain is real and real painful.

Mar 22, 2016 11:40 AM

I have Chronic Endometritis and the pain is horrible! My Obgyn doesn't listen to me he just keeps putting me on antibiotics and my periods NEVER return to normal and I am in constant pain! I have the Essure as a form of birth control, I think that is what is causing all of my problems, I am currently looking for a new Obgyn, one that will LISTEN to what I have to say and not just send in his residents to do his job, I have yet to see the actual Obgyn, only seen his residents. Time for new ob!

Mar 22, 2016 11:40 AM

Thanks for the reply Beets! I too have been told to go gluten free but I see zero positive results except maybe the vanity side of things i.e lost some weight (but not the bloat) & my skin looks great! I'm beginning to panic now about the fact I have never (that I know of) fallen pregnant! Been in a nearly 4 year relationship now and am not actively using protection (bar the contraceptive pill for 14 weeks) as having a child would only be a positive in my relationship!

I got my bloods taken to check on my thyroid levels last Wednesday & went back on Monday for results.My GP wasn't happy with the results as she said they were too high to be normal but all she recommended was having them monitored every 3 months!

Mar 22, 2016 11:45 AM

I am actually a 4th year Midwifery student so over the last 4 years I have spent 1000'd of hours studying and witnessing these things! So I KNOW something isn't right.I can feel it in my body that the longer I am left,the more damage it will cause but I feel as though I'm talking to a brick wall with my doctors!

I did have one amazing E.D doctor who was so caring and completely understanding but I do feel as though this was because we were nearly similar in age and also because I was so emotional and crying hysterically.

I've done all I can physically and mentally! I stopped smoking cigarettes and consuming alcohol over a year ago,I'm super active in work and outside,I have a good clean diet but I'm still feeling a prisoner to my own body!

Mar 22, 2016 9:20 PM

CGxo, where would you be if you had continued with your habits? It sounds like you are taking care of yourself. Cheers to you !!!
My naturalpath said I NEED TO be eating gluten when I do the test if I were to do it. Otherwise it may give a false reading. But I am not worried about doing the test because I feel better when not eating gluten or dairy, I do eat low fat 2% yogurt for calcium. I am hypothyroid since 26/28. My definition of feel better is no swollen sore belly, no constipation, decrease in inflammation, overall general improvement physically and mentally, calmer.

Mar 23, 2016 1:06 AM

Mopar, I've got a great recommendation for you if you lived in Delaware....

Mar 30, 2016 9:58 AM

Finally got my laproscopy ๐Ÿ˜€ Was taken into hospital 29-3 with EXTREME 10/10 pelvic pain,admitted straight away and then at 9am today 30-3 taken down for surgery! And boy oh boy how lucky I am that we did! Although I genuinely believed all pain stemmed from the right side,we discovered a hemorrhaging 25cm in full size cyst on my left ovary! Without a shadow of a doubt would of died if it had burst anywhere but a hospital! I had all endo adhesions and scar tissues removed from organs and as of now I am just feel SO blessed!! I hope this is the start of the end!! ๐Ÿ˜Š

Mar 30, 2016 6:26 PM

CGxo, I'm praying you have an easy & full recovery. Than k Good they found it in time! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Mar 30, 2016 11:43 PM

CGxo, I hope your recovery and outcome are good. My thoughts are with you for a healthy recovery. Take care, Beets.

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