Severe endometriosis symptoms and conditions

I suffer from severe endometriosis, and occasionally, if something goes awry, I have terrible cramping. The pain is extremely intense and has caused me to pass out. I have tried several medications, some narcotic, some non, and some naturopathic. I would say that Dilaudid is the best I've tried. Not only does it do a wonderful job of getting rid of pain, it also seems to be easier on the stomach than other opiates in its class, and causes less side effects. Of course, highly addictive such as other narcotics, but if taken only when needed it is a lifesaver.

I had the Mirena Coil fitted 4 months ago and since then I have suffered 2 infections. I suffer with severe endometriosis and had a liter of blood removed from my last ovarian cyst, which, I've been told is growing back again. I thought this coil was supposed to improve things, but alas, sadly, that's not the case...It feels like I can actually physically feel it inside of my uterus. I am 36 and don't have kids, therefore had to be put under general anesthetic when the damn thing was inserted, had horrific headaches and abdominal pain since and I'm told this is the best protection I have for my condition!?! I don't know what it is that's making my system dislike it so much, scans show it's not displaced, it's just, for some reason, not agreeing with me, maybe I need a little more time to adjust, but it feels like I have an alien device sitting inside of me and it's hurting instead of helping...any advice on the subject would be greatly appreciated!!!

I have/had severe endometriosis and began using BCPs therapeutically after having my left ovary and fallopian tube removed due to a large endometrioma. I used Yasmin for over two years and loved it: It calmed my PMS mood swings, did not produce acne, no weight gain, and no between-period spotting. I switched to Yaz for three months, but my periods became irregular and I had spotting issues, so I went back on Yasmin. I never stuck with a BCP before because all others produced the aforementioned side effects.

Unfortunately, with Yasmin, my blood pressure went from the 120/70 range to the 180/90 range in two years. My OB GYN was so alarmed by the increase that she actually made me lay down for half an hour so she could retest me. The second reading (after resting) was even worse than the first.

The doctor took me off Yasmin immediately and now I'm on the blood pressure medication "Prinzide" which is causing horrible side effects.

I wish I'd never taken Yasmin.

hI was diagnosed with severe endometriosis at 20 years old had my first laparoscopy at 21 (September 2003) and my second at 23 (January 2005). After my first laparoscopy I was placed on Yasmin by my GYN who said it was a great drug and would help with my pain and clotting. I had just started dating my now husband and didn’t seem to have any side effects of from it. If I recall correctly at one point after my second surgery I stopped taking Yasmin, but after a lot after clotting went right back on it. I will be 27 Saturday so have been on Yasmin for the last 6 years.
My husband was a paramedic/EMT (so knows a little about this type of thing) before he joined the military 2 years ago and prior to that I lived close enough to home to keep the same doctors (even while at college). Now that we are a military family we have to jump through hoops to see a doctor, but would visit home every few months so I continued to see my same doctors. We recently had to move across the country so I am not able to do that and now have to see the military doctors or wait for approval to go off post. This week for the first time I ran out of my prescription so my husband and I decided I would just get off of it for a little while.
Sorry for the novel, but I am getting somewhere with this I promise! I caught a 24 stomach bug last week and can’t seem to recover from the nausea and dizziness so bad I barely stand up. Saturday would have been my last day on the pack, but since I was sick the last pill I took was Thursday. My husband thinks I am dehydrated, though can’t understand why after plenty of rehydrating including military rehydration packets. Something told me maybe I am having withdrawals from Yasmin (though I have never heard of withdrawals from birth control) and decided to look it up. After reading many forums which ultimately led me to medications.com I am thinking the following symptoms I have been experience the last year that doctors just can’t seem to figure out could be related to the Yasmin. My symptoms are:
• Low blood pressure (daily for the last 4 months and periodically over the last 6 years or so, going as low as 79/47 and consistently in the low 80’s over low 50’s in recent months)
• Excessive weight gain -25 lbs over the last year I started at 130 (still a little high for me, but have always had a slow metabolism) and had been that for at least 8 months prior. In September of 2008 the first 5 lbs came on, it’s starts with a fluctuation between 130-135 for a month or so than one day I am 135 and can’t go below that no matter what I do including exercise and eating right than fluctuation between 135-140 than 140-145, 145-150 and same thing up until now where I am 150-155 and seeming close to hitting the 155 mark. I have never been over 140 max and was only that as a kid after my parents divorce which I lost was never more than 128 tops. Oh this week when I was sick I threw up for a day and half and didn’t eat for 4 days and still gained 4 pounds, how is that?!?!?
• Extreme Fatigue
• Thirst ( which I can’t seem to quench no matter how much I drink)
• Dizziness
• Problems breathing (like I can’t catch my breath)
• Headaches
• Nausea
• Frequent urination
• Heart palpations
• Depression/Moodiness/Crying for no reason
• Breast pain
• Cellulite I never had before
• Ears hurt a lot (but checked out with no problem)
• And the last one I wouldn’t have mentioned but I too have the pain/numbness in my right arm going from my neck down to my leg and lots of pain with it. I was in a car accident a few years ago and have a back and neck injury as well as nerve damage on my right side which I thought was the pain I have been feeling but it has been getting worse and am only mentioning it because it’s someone else’s symptoms as well.
Now until yesterday I thought my low blood pressure and weight gain were signs of an underlying problem and the rest were symptoms related to those things (I am on wait-list to see an Endocrinologist), but now I am thinking it could all be from my birth control. Do you think I am reaching here, or considering what is being learned about the drug is it a possibility? I greatly appreciate anyone’s comments/suggestions. Thanks so much for listening.
S.

I cant believe i have just found this page!!

After feeling more sore inflamed 'hormonal' spots on my poor cheeks i decided to look up 'mirena related acne'.. i knew that it had some side effects, like possible skin breakouts, but i really didn't think that i would have ended up with skin like a pubescent teenager.

i was diagnosed with severe endometriosis after years of complaining to my gyne at 19. i tried all the usual route of contraceptive pills, oestrogen and the mini pill, but non seemed to suit me, so i was recommend the 'mirena'.

i first had one implanted 4-5 yrs ago, this had to be removed after barley 5 months. i was doubled over in agony on the bathroom floor and often had my breath taken away with excruciating stabbing pains.

i had my current one inserted in May 2007 at 23, under general anaesthetic whilst having a laparoscopy to try and remove some of the endometriosis. Granted i felt rough after being in surgery for 5 hours, but once all the stitches were gone i thought i would begin to feel human again.

i have put on quite a bit of weight, i went from 7 1/2 stone to just over 9 stone in just over a year (i don't know what it is in lbs sorry!) believe me at 5ft in height it's noticeable!!!!

i have never previously had migraines until the mirena, i now have them every 2-3 months or so.

my poor long suffering boyfriend thinks i no longer 'fancy' him as my libido has gone!
my breasts have become so painful and swollen it hurts to sleep on my side, its painful if i even try to run up stairs, and the boyfriend is no longer allowed to touch them!!

and at certain time in my cycle, my tummy becomes so swollen, i look 5 months pregnant, in fact i was asked the other day when was my baby due...i was really not impressed!! during the swollen tummy time sometimes when i am sitting down it feels like the mirena may burst out of my back passage.. (not a nice image i know) there is a sharp stabbing pain and then a wave of nausea comes over me, this stabbing pain can last on and off for a full day.. i have told this to my gyne.. he had said it must be irritable bowel syndrome!! i have never had IBS before!!

all this at 24 nearly 25, i'm supposed to be enjoying these years, but with my skin the way it is and my body confidence shot, it is really really depressing.
i just thought for so long i was being silly and over reacting to everything, but obviously i'm not the only one..i would not recommend the Mirena to anyone, i fact i would not wish it on my worst enemy. ther are far too many side effects!

I was diagnosed with severe endometriosis approximately 2 1/2 years ago. I have fibroids all over my ovaries, uterus, and cervix. I had lapo. surgery 2 years ago to burn away the tissue and help treat the endo. Recently, the excruciating pain has returned and my OBGYN has put me on dalaudid for the pain and said my only option at this point is the Lupron. I received my first shot about 3 weeks ago. I was TOTALLY against doing it shots, but was told by my OBGYN and my fertility doctor that it was my only choice. After reading some of the comments on here I want to refuse my next shot and just deal with the god awful pain of the endo. I am so confused and don't know what the heck to do. If anyone had any advice with where I should go from here, please respond to my comment. Thank you so much.

Hi everyone, I am a 36 year old with severe endometriosis. I was diagnosed at 17 and was offered a hysterectomy at that time, since I would never have children (So they said, 5 miscarriages but 2 babies, later, I had them all fooled). I have had 6 surgeries throughout the years for severe pain and endo growth. Finally, I asked for a hysterectomy to avoid all of these problems. My Dr. asked me to try Lupron first for relief. I have to say, I am so glad I did!!! I have felt better on the Lupron than I have in years. In addition to this, I have been taking 5mg Aygestin as back therapy (Norethindrone) and I take Calcium replacement daily. It has been wonderful. I have felt good, LOST weight, but do have annoying hot flashes the first week after the shot, but they go away. Additionally, I have had fibromyalgia for the last five years, and my pain symptoms have gone away with the Lupron +add back therapy. I think the 5mg of Norethindrone is the key to preventing the terrible side effects that Lupron is noted to have. I would recommend the shot, only with the additional Progestin- along with a multivitamin with calcium. I am GLAD I did! A hysterectomy may still be in my future, but for now, I have options.

Hello Everyone,

First I would like to address those who had terrible reactions to the drug. My heart goes out to you and please don't be offended when I tell you this: Life is a risk and when it comes to science there are never guaranties. With anything you will have a side effect good or bad. You will be a Guinea pig no matter who you are or what drug you take, because everyone reacts differently. Some good and Some Bad.

Second, to those of you who are looking into this for a cure, sorry unfortunately like cancer this is a reoccurring disease. The drug is to help calm your system down and to give your body a rest. I would have to say Lupron saved my life. After all the years of pain and suffering, and hospital visits that occurred due to the severe pain. After having surgery to remove these areas and the doctor who recommended this drug to me was a life saver. I was on it for a year and was put on the NuvaRing afterwards and had mood swings and hot flashes, BUT Ladies...No PERIODS and NO MORE PAIN!! Yeah I gained a little weight, but that was water weight, you can go to your local health food store to buy herbal diuretics and exercise...excercise. I agree Lupron isn't for everyone, but either is another drug out there. You take a chance with any chemical you put in your body. It is HOPE that encourages us to try these medications. I have to say 10 years later I had a beautiful little boy and yes they say even pregnancy gives you relief, but unfortunately for me I had a C-section. Causing me more scar tissue and a reoccurred of severe endometriosis. Due to funds and no insurance I have had to be put on a sister drug called Depo-Provera. It is similar side effects, but ladies take my advice. Lupron isn't for everyone, but I think if you are a good candidate for the drug, try it. It might make a difference in your life...I pray it is positive!!

The ups and downs. I have been on Loestrin 24 for 4 months now and it's been a real experience. To give a quick background so you understand what has brought me to this I will begin with my medical history (at least a brief bit of it)
I am on this particular medication due to severe endometriosis. Six years ago I had the Laparoscopic Surgery and two years ago they did a DNC and Balloon Ablation at the same time. According to my Doc this last treatment had been 100% effective for his patients and he was convinced it would for me as well. One full year after my DNC and Balloon Ablation I was still bleeding very heavily at least 25 days out of each month. For those of you who have or are suffering like this you will join me in saying that anything is worth a shot.
My last visit they did all the typical testing and ultrasounds to make sure everything was as it should be internally. They did another biopsy and everything came back normal. The Doctor then started to push a hysterectomy. I am not completely against that option but I am 32 years old and want to prolong something that definite as long as I possibly can.
So, on to the meds. After my first week on Loestrin I had suffered the following symptoms: bloating, severe mood swings, enlarged breasts, breast pain, anxiety, and the bleeding had not let up at all. I called my Doctor and begged him to get me a different medication and he asked me to give this at least three months to get in my system and that I may see changes if I could hang in there. I stayed on the meds and for the first full 3 months I wanted to toss them in the trash! The feelings of anxiety and depression were consuming me and to top that off I was suffering from insomnia as well.
I did finish the pills and started on month 4 and almost immediately I saw a change. ALL the side effects subsided almost like I had never had any. The only remaining problem I currently have is a very small weight gain. Approx. 5 lbs. But for someone who has struggled with endometriosis since I was 20, been to Dr. after Dr. and gotten the same doom and gloom story of what lies ahead for me and my poor reproductive system.... Well, this has honestly been the best result yet. I can and will live with the weight gain and I will happily take my 2 day period each month. I LOVE this pill. Honestly I would do it all over again to get to the point I am now. I can live a normal, happy, productive life and I have Loestrin 24 to thank for that!

I thought I was alone in all this. I have been on Yasmin for about 2 years now. I have severe endometriosis and tend to get ovarian cysts and my doctor suggested I try it because she said the progesterin in this pill helps to inhibit cyst formation. Reading all the postings makes me feel relieved about how I have been feeling because maybe it IS the pill, but also makes me feel like what should I do or take instead? All the mental anguish described by others here is what I too have been experiencing. The depression, sometimes extreme anxiety, not wanting to go out or even be around others, the weight gain and lethargy. Well, I think I need to do more research and/or just take my chances and go back to my other BCP. Thanks everyone for sharing!!

I am a 23 yr old mother of one. I have severe endometriosis and I let my doctor talk me into taking the LUPRON injection, without researching it first. My first week on the shot I started shaking severely and was always sick to my stomach. I now am in the second month of my first dose and I have no appetite what-so-ever, I am losing my hair, I swell in my knees, ankles, and stomach, I have severe mood swings, I am forgetful, and I only get about 4 hours of sleep a night (if that). Most days I hurt in the bend of my legs at the groin area and am unable to get off of the couch to play with my 3 yr old little boy. I now have to buy my clothes a size larger than what I wear because of all the swelling. Sometimes I shake so bad that I can't hold anything in my hands or even walk straight.

I did a six month stint of the Lupron shots as a treatment for severe endometriosis. The entire experience was horrible. At first I was sick to my stomach for days on end. This fluctuated on and off for the duration. Shortly after my mom started noticing intense fluctuations in my mood. I don't know that there is any way to describe it other than I felt like I was going crazy. All I wanted to do was rage and scream and fight for reason what so ever. I was also extremely lethargic for long periods of time. When the lethargy finally wore off I would be so manic that I would have overwhelming attacks of anxiety. About one month into the treatment my hair started falling out in clumps. By the time the treatment was over I had lost half the thickness of my hair. I was so miserable that my own family didn't want to be around me.

I've been on Yasmin for just over a year and I cannot complain. I began taking it to relieve severe endometriosis symptoms, and it has truly been outstanding in that capacity. It has also cleared up the "beard" of acne that I had on my chin and around my mouth. During the first 2 months I had nausea, dizziness, and moodiness, but it has since gone and I have no complaints at this time. Just thought you might like to see a positive experience!

I am only 36. I had a Laparoscopy and Hysteroscopy of my uterus. I was in surgery for over 2hours. My uterus was attached to my stomach, my ovary attached to my uterus. I had my right fallopian tube all twisted like a telephone cord. My left fallopian tube had a huge endometrioma in it. The doctor put everything back where it belonged, and cauterized some of the severe endometriosis. After surgery, I took Lupron for the recommended 6 months. Yes, it helped my Endometriosis, while I was on it. But, it is now ONE year later, and I am in just as much pain as I was BEFORE I took this medication. AND NOW on top of the endo pain, I HAVE SIDE EFFECTS FROM THIS MEDICINE THAT WON'T GO AWAY. I have had Foot pain since the first shot. I had leg pains, deep in the bones. I have had tendonitis in every limb, it just keeps moving around my body. (Lupron supposedly dries out your tendons) I had memory loss (though that was mostly temporary, mostly words) I had the night sweats and insomnia, though those both went away for the most part. I too was extremely emotional, both angry and upset. I also began to feel helpless and almost suicidal. The pain from the side effects made me feel this way. I gained about 20lbs. I have Osteopenia now, which is bone density loss, everyone should have a bone density test after Lupron. My feet are still killing me though. I wish they weren't, I would give anything to turn back to before Lupron so that I could say no thank you. Good luck to anyone who takes this, but hopefully all these posts will help you decide not to take it. It really isn't worth messing your life up at such an early age. I will never be the person I was before.

My 16 yr. old daughter is being treated for severe endometriosis with the Nuvaring. Started wearing it after first surgery, last May. She wears 3 rings over nine weeks, then has a period for a week. She started having lower back paing that interferred with her life in July or August. By her second surgery in Feb.'06, back pain was debilitating and she had to leave school and switch to home school because she is mostly bed ridden. Every movement causes her tremendous pain. She is currently taking five meds for pain, including morphine. She can bearly walk. Doc (GYN) says it's not related to anything in his department, yet MRI, bone scan, x-rays, blood test are all negative. While we are pursuing further testing, I believe that the ring may be responsible for this. So far there are no other explanations, and the research I have done so far is pointing in that direction. My once vibrant, active happy, college-bound teen is now 25lbs lighter, severely depressed and in constant pain. I hope it is something as simple as discontinuing the ring, and I hope that little ring hasn't been the source of her suffering all this time.

Wow! This forum is really informative and scary!

I have tried numerous pills, Marvelon, Ortho Tri-Cyclin, Diane, Alese and all have caused the same symptoms: Depression, lack of energy, emotional outburts, 10-15 pound weight gain and abdominal bloating to the point where people would ask me if I was pregnant (and the rest of my body would look porportional).

Its been 4 years since I have been on and off the pill and now at the age of 26 I am beginning to notice a chance in my hormones which I put facial hair on my chin and sideburns!

Being in a new relationship my doctor has prescribed Yasmin as birth control to help with facial hair and contraception.

I haven't started and am now apprehensive...does anyone have any suggestions or similar experiences with hair growth/reduction?