Desogestrel - has this worked for anyone?
Posted , 3 users are following.
My daughter (age 16) has been diagnosed with probable endometriosis becasue it really is the only thing that fits her symptoms. There was no evidence of endometriosis on an ultrasound scan or even an MRI scan. However, the consultant told us that such scans cannot completely exclude endometriosis - she could have early endo / thin adhesions. She was prescribed desogestrel in early Nov 2019, staring off with 1 per day, then 2. She was still getting light bleeding and the consultant said that the aim is to stop all bleeding and upped the dose to 3 per day. She is still getting bleeding. The consultant said she could go up to 4 per day. She has had no change in her level of pain, which is severe, everyday and is destroying her life.
Is anyone else being treated with desogestrel? How many do you take per day? Has it reduced / eliminated your pain and, if yes, how long did it take?
0 likes, 14 replies
sandy43858 Suki_girl
Posted
Hi suki I haven't been treated with that medication. The best way to know for sure is to have a laparoscopy surgery. Keyhole so they can have a look at her organs. I had a ultra scan and mri scan which came back negative. It was only when they operated they found endometriosis patch on my ligaments which was removed. A woman could have really bad endometriosis and have no pain or have the smallest patch and have the worst pain. Ask for a referral to guys hospital they are really good.
Suki_girl sandy43858
Posted
what do you mean by ligaments? Which ligaments? Where was your pain?
sandy43858 Suki_girl
Posted
Hi suki also. Has your daughter had tests for her thyroid? A underactive thyroid can cause non stop bleeding. There is no cure for endometriosis but you can manage it through diet and pain management. I noticed that eating less sugar. Gluten and increasing sugar foods and eating Turmeric helped me.
rachel61260 Suki_girl
Posted
Hi Suki girl, I think it's a good idea for a laparoscopy for your daughter as that medication is only trying to mask the problem. I had every scan possible before my diagnoses and no endo was found, untill key hole surgery like sandy reply it was on ligaments but a small amount, I was is the worst pain for a small amount. She really needs to be diagnosed via this surgery and hopefully like me it will be a small amount but removed easily which made me pain free for a year, I'm now starting the process again because I take no meds or contraceptive, your daughter could start hormone treatment after surgery which should work better and help prevent it coming back quickly. Sending positive thoughts to you and your daughter. All the best.
Suki_girl rachel61260
Posted
We are seeing the consultant next week (MRI follow up) and i will ask her about laproscopy. Even if it isnt endo, the lapro will show that and she can stop taking unnecessary hormones.
What do you mean by ligaments? Which ligaments? Where was your pain?
rachel61260 Suki_girl
Posted
I had endometriosis attached to a ligament that holds the uterus in place and is attached to the sacrum (uterosacral ligament) , I had none on my reproductive organs which was good for fertility reasons. I had pain when passing stools especially, always leading up to my period was worst and then faded away once period came to an end. The pain was in my pelvis above my public bone, it was as if my womb was about to burst when I needed to go to the toilet, I also get pain in my hips and thighs like I've run a marathon and a heavy achy feeling deep in my lady parts. Ive had an MRI recently for my pelvic/spine area for a ruptured disc in my spine but no endo was picked up but I know mine is back now with new pain in my rectum and lower back, after reading through this forum I've realised how complex this disease is unfortunately. Good luck.
Suki_girl rachel61260
Posted
So, you can have the endo adhesion in one place but feel pain in all different locations in your abdomen?
sandy43858 Suki_girl
Posted
Hi suki so endometriosis can grow anywhere. It normally starts near your ovaries uterus area. But sometimes it can pass these and attach itself to muscles that hold the uterus in place or your bladder. It can basically travel anywhere. So the best way to know is via surgery. My pain was pelvic pain. Sore vagina. Painful sex. Pain when sitting.
sandy43858 Suki_girl
Posted
Hi Rachel mine is the same as yours. I had it on my right ligament that holds the uterus. I feel much better since having my operation in May 2019. There's a really good book on endometriosis diet. Which I kept to.
Suki_girl sandy43858
Posted
How long did it take you to recover after your op? I need to know how long my daughter will be off school (not that she is going to school much at the moment anyway due to the pain!).
Can you tell me the name of the endo diet book, please?
rachel61260 sandy43858
Posted
Hi sandy, id like to take a look at the book if you have the name, I'm up for trying anything. It's so frustrating that it's come back, I'm bleeding 3 weeks out of 4 now too. We were trying for a baby so it really sucks, nice to talk to others who understand.
rachel61260 Suki_girl
Posted
It took me a couple of weeks to feel totally normal, I was told only a few days recovery by the nurse for just investigating but then the surgeon removed what he found so it was longer, I think the nurse was being optimistic. Tummy was a little painful to move around but i mainly felt a general feeling of unwell for a week.
sandy43858 rachel61260
Posted
Hi Rachel it's called the endometriosis health and diet programme. I went for IVF after my surgery. You can referred to.
rachel61260 sandy43858
Posted
Thankyou sandy ill take a look. We had our first child after my first opp so we have been blessed with our little boy so unfortunately will have to go private for ivf it that is what we need. I really hope ivf worked for you!