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I had a total hysterectomy( including removal of bothe ovaries and tubes) 16 months ago after years of endometriosis. Suddenly experienced acute pain and bloating. After CT scan and MRI, diagnosis is hemorrhagic cysts. Can this be possible? Obgyn says he is confident it is not cancer but I am so scared. Another surgery next week to be sure. Just don't understand how I can develope ovarian cysts with no ovaries. Has anyone ever heard of this? Thanks in advance for all of your help!
I have been suffering from ovarian cysts since age 12 ( I am now 32). I had to have my right ovary removed due to a 9cm ovarian cyst at age 12. At age 16 I was diagnosed with Endometriosis. I have had 12 laparoscopies due to endometriosis and ovarian cysts as big as 5cm, gallbladder removed, appendics removed, and I had a complete hysterectomy at age 25. Now here I am 6 yrs later (after hysterectomy) having pain again. I went to my GYN this past Friday and was told I have a 4cm cyst and it appears that I may have Residual Ovary Syndrome and they want to cut me open again. I had the right ovary removed 20 years ago and now it is appearing as if I have an ovary again! 6 yrs ago everything was clear on that side. I go for a CT scan tomorrow. I know I will be having another operation, but I am in SHOCK that this is even happening... just when I thought I was done dealing with all of this female crap here I go again.
I have been suffering from ovarian cysts since age 12 ( I am now 32). I had to have my right ovary removed due to a 9cm ovarian cyst at age 12. At age 16 I was diagnosed with Endometriosis. I have had 12 laparoscopies due to endometriosis and ovarian cysts as big as 5cm, gallbladder removed, appendics removed, and I had a complete hysterectomy at age 25. Now here I am 6 yrs later (after hysterectomy) having pain again. I went to my GYN this past Friday and was told I have a 4cm cyst and it appears that I may have Residual Ovary Syndrome and they want to cut me open again. I had the right ovary removed 20 years ago and now it is appearing as if I have an ovary again! 6 yrs ago everything was clear on that side. I go for a CT scan tomorrow. I know I will be having another operation, but I am in SHOCK that this is even happening... just when I thought I was done dealing with all of this female crap here I go again.
What did the scan show? If it is only 4 cm, it may not need to be removed. It may go away within a few weeks without any treatment. It may be what is known as a functional cyst and not a recurrence of the endometriosis.
There is a blood test that can be done to see if you have functioning ovarian tissue: an FSH level. If you are not taking any estrogen and the FSH is in the range for a premenopausal woman, you have ovarian tissue that is making estrogen. If you are not taking estrogen, have you had hot flashes or other menopause symptoms?
Surgery for severe endometriosis is extremely difficult. The ovaries can stick to the uterus or the inside pelvic walls --- they are in essence glued to other tissues. Removing the ovary can be like trying to unseal the flap on an envelope --- without tearing the flap or the envelope! If the ovary is stuck, even the most skilled and meticulous surgeon may leave a little tiny fragment of ovary behind. That results in the "residual ovary syndrome." With each surgery, there is a tendency for adhesions --- scar tissue --- to form. Then even a small cyst formed from an egg follicle or at the time of ovulation can be painful as the enlarging ovary stretches the adhesions.
I am so glad I found this website. I've been searching and searching for answers and it seems like us 40somethings are just not as important as the people who still have uteruses and simple cysts (which most of us have had). Much of the literature I've seen has said that recurring cysts are common. But...finding information about the type of things that happen down the road following a hysterectomy with the ovaries is not easy. After reading all of your posts, I am starting to think they tell us to keep our ovaries because it helps us with hormones, blah, blah, blah has pros AND CONS. I also now think the cons outweigh the pros. Here is my story:
I had a abdominal hysterectomy when I was 28 from scar tissue caused by PID resistant to every type of antibiotic they tried. I was in pain for 16 months straight and couldn't eat. I immediately felt better afterwards (well, after the 6 week recovery), but the pain was gone, the big massive one. Fast forward 20 years. I lost 20 pounds, wasn't eating, and had pain in the pelvis. Went to the hospital. The ER doctor with a bedside manner exactly like House's (no kidding) sent me home with pain meds and said I don't see anything and go see your PC physician. I only take Tylenol, so that was a waste of time. Two days later, I see my primary's partner because it was an emergency and he was busy. I mentioned that five years ago I had ruptured cysts on both ovaries and was really sick admitted to the hospital. The partner sends me for an ultrasound. They call me up and tell me, the ultrasound was normal. I follow up with my gynecologist and tell her, can we do an intra-obdominal because the first ultrasound tech never found my ovaries. She says yes, but I'll have to wait a couple hours because they're backed up. Hey, I brought a book. No problem. This tech goes in there. She's pressing on things and I am literally grimacing and telling her that hurts a lot right there. She finishes and says the doctor will come back in a minute. Then she gets a phone call and says, you can go now. The doctor says it's not gynecological. Okay? But it doesn't end there with my total dismay. I order a copy of the report. That tech couldn't find my ovaries either. How can you tell me it's not gynecological if you didn't even see my ovaries. My best guess is it was 5 oclock and she wanted to go home (after waiting two hours). Okay, back to my primary, who is my only true, caring doctor that takes more time to learn about my history than any of my specialists. He sent me for a CAT Scan. I told the CAT Scan people, I've had two different ultrasounds and they can't find my ovaries, I really hope you guys can. I know that CAT scans produce 100s of images and techs need to be highly experienced to be able to read them (thus why one of you had a uterus sized tumor masquerading as a uterus--unbelievable). Of course, that's all I know right now besides the fact that i've been in massive pain for three months now and this process just keeps dragging on and on. I'm starting to believe we may be better off just removing everything and avoiding this 5-20 year later nightmare that everyone on this board has been experiencing. With so many things about money these days, could they really just want to feed the system years down the road with us coming back for the next round of surgeries--that's some twisted job security. I hope it's not true. Thank you everyone for sharing your experiences because it has helped me to understand that ovaries do cause bigger problems later on after hysterectomies. I am convinced that they're trapped between my colon plus other organs and probably all necrotic. I feel like just going to a trusted gyno-surgeon and saying give me a laparotomy find the crap and remove all of it.
Thanks for helping me. I hope together we help more women deal with this topic.
I just had an ultrasound. After having severe pain on and off for 6 yrs and more since I had bladder surgery a month ago, doctor found a 3 cm mass. The tech says it looks like an ovarie and has severals small cysst attatched. I had a full hysterectomy in 2006. I'm not supposed to have ovaries. My records show the doc took my ovaries. But there's something there. I wonder if this means more surgery?
I had a complete hysterectomy that was done in parts, started off as a partial, then a few years later they removed my remaining ovary, which was done in 2008. Did hormone replacement therapy for a short period of time, and couldn't handle it, so we decided to stop it. In 2010, I started to have lower abdominal pain that we couldn't figure out, my stomach would swell up and I would spend days in bed on end. They did a cat scan, finding a small cyst, called it an ovarian cyst and dismissed it telling me that my issues were GI related, they sent me to a GI doctor, he did tests found an ulcer and that my gall bladder had sludge, so he removed it, put me on ulcer medicine saying this would solve my issue. Here we are a year later, and my issues continued, 3 weeks ago I was sent to the ER and they did yet another cat scan, called me 3 days later and said I needed to follow up with my gyn that the cyst had grown in size (now an inch in diameter) she finally sent me for an ultrasound, (internal and external) the cyst could NOT be seen on the ultrasound, so she referred me back to my primary care doctor. He finally sent me for an MRI, a week later I was informed that there are MULTIPLE cysts, and was referred BACK to my gyn doctor. After bloodwork they found that my estrogen levels are high, so she thinks there are particles of my ovary remaining somewhere that are producing this estrogen, and seems to think that there is endometriosis particles embedded on the side of my large intestines. Frankly its frustrating being sent back and forth and left with no answers... the more tests they do the less we actually know.. has anyone experienced this? And if so, how was it resolved?? I've had multiple surgeries on my abdomen (4) so obviously there are risks with this. They mentioned laproscopically going in and checking things out, but since I have had so many surgeries they can't promise they will be able to navigate around the scar tissue... any information would be greatly appreciated... ty
I had a complete hysterectomy that was done in parts, started off as a partial, then a few years later they removed my remaining ovary, which was done in 2008. Did hormone replacement therapy for a short period of time, and couldn't handle it, so we decided to stop it. In 2010, I started to have lower abdominal pain that we couldn't figure out, my stomach would swell up and I would spend days in bed on end. They did a cat scan, finding a small cyst, called it an ovarian cyst and dismissed it telling me that my issues were GI related, they sent me to a GI doctor, he did tests found an ulcer and that my gall bladder had sludge, so he removed it, put me on ulcer medicine saying this would solve my issue. Here we are a year later, and my issues continued, 3 weeks ago I was sent to the ER and they did yet another cat scan, called me 3 days later and said I needed to follow up with my gyn that the cyst had grown in size (now an inch in diameter) she finally sent me for an ultrasound, (internal and external) the cyst could NOT be seen on the ultrasound, so she referred me back to my primary care doctor. He finally sent me for an MRI, a week later I was informed that there are MULTIPLE cysts, and was referred BACK to my gyn doctor. After bloodwork they found that my estrogen levels are high, so she thinks there are particles of my ovary remaining somewhere that are producing this estrogen, and seems to think that there is endometriosis particles embedded on the side of my large intestines. Frankly its frustrating being sent back and forth and left with no answers... the more tests they do the less we actually know.. has anyone experienced this? And if so, how was it resolved?? I've had multiple surgeries on my abdomen (4) so obviously there are risks with this. They mentioned laproscopically going in and checking things out, but since I have had so many surgeries they can't promise they will be able to navigate around the scar tissue... any information would be greatly appreciated... ty
Why were your hysterectomy and ovarian surgery done --- what was the diagnosis?
Did you have endometriosis at the time of either surgery?
How old are you?
If you have estrogen levels that are in the premenopausal range, it is likely that you have a remnant of ovary left. If the last ovary that you had removed was stuck to the inside of the pelvic wall, it would be easy for a small piece of ovary --- a remnant --- to get left behind when the ovary was removed. Endometriosis is a common reason for the ovary to be stuck.
If endometriosis is a consideration, There are medications that can be used to treat it. They can have side effects and would not be desirable for long term treatment, but a trial on one for about three months could help with the diagnosis. If the pain improved, it would strongly suggest that the issue is endometriosis.
If you are close to menopause age wise --- in your late forties, for example, the medication could be continued for a while and stopped.
If you did not respond to the medication, then it might be something other than endometriosis, perhaps just scar tissue around the piece of ovary.
If it looks like you do need surgery, ask to be referred to someone who does a lot of laparoscopic gyn surgery. The more experience, the better. And if laparoscopy is not possible, it is still possible to use an old-fashioned incision. A wise gyn surgeon will know when laparosopy is not the best tool to use.
I had a hysterectomy in sept 2002 when I was 21 due to cervical cancer, severe endometriosis, and complex cyst on my ovary that I was told could become cancerous. They took my cervex, entire uteris, fallopian tubes, and 1 ovary. The ovary they left had to have several cysts burned off with a laser. Silly me I thought that since I no longer have a pap to smear that I didn't need to see a gyno any more. have not seen one since late 2002. Now I am having issues with pain in my back and side and running down my leg. I have also increased 2 bra sizes in the last 3 months. My husband loves it but I feel engorged like you get a day or two after giving birth and they hurt sooo bad. Very heavy and solid. I feel exhausted all the time and just all over feel blah. The company I work for is based out of another state and I can not find a participating provider less than 30 miles away. Called the number on the back of the card and everything AAHHHHGGGG. Sometimes I really hate being a girl.
After starting with ovarian cysts and endometris since I was 13. I have had many laporoscopies, cyst removals and D&C's as you can imagine. I have also had a wedge re-section on one of my ovaries after being diagnosed as polycystic. I have also had a history of hormonal induced severe migraines (inc paralysis, vision issues) To cut a very long story short, I have had a partial hysterectomy and a left ovaphorectomy in 1999 at the age of 31. Everything was fantastic until last year (at 41)when I started feeling nauseous in the mornings (not unlike morning sickness) not possible I know. After many investigations, gastric and gyno, I was told it was an extremely long migraine. Well 3 months ago, I was admitted into ER for severe, unbearble pain (which I told them was a ruptured cyst) its a pain you never forget. After many delays, I finally got told that they would not operate as it was a Corpus Luteum and besides, because of the amount of previous surgeries it would be too dangerous for me. I spat the dummy and told them that I wanted the whole ovary removed. (they didnt do it) which in hindsight was probably a good thing. Now to my question. This has happened again each month since then.
I have had two opinions from different specialists
1. to take a progesterone only pill or
2. take an oestrogen only pill.
My dilemma being I could never take the normal contreceptive pill due to my migraines.
Any suggestions would be appreciated greatly!!! Thanks
After starting with ovarian cysts and endometris since I was 13. I have had many laporoscopies, cyst removals and D&C's as you can imagine. I have also had a wedge re-section on one of my ovaries after being diagnosed as polycystic. I have also had a history of hormonal induced severe migraines (inc paralysis, vision issues) To cut a very long story short, I have had a partial hysterectomy and a left ovaphorectomy in 1999 at the age of 31. Everything was fantastic until last year (at 41)when I started feeling nauseous in the mornings (not unlike morning sickness) not possible I know. After many investigations, gastric and gyno, I was told it was an extremely long migraine. Well 3 months ago, I was admitted into ER for severe, unbearble pain (which I told them was a ruptured cyst) its a pain you never forget. After many delays, I finally got told that they would not operate as it was a Corpus Luteum and besides, because of the amount of previous surgeries it would be too dangerous for me. I spat the dummy and told them that I wanted the whole ovary removed. (they didnt do it) which in hindsight was probably a good thing. Now to my question. This has happened again each month since then.
I have had two opinions from different specialists
1. to take a progesterone only pill or
2. take an oestrogen only pill.
My dilemma being I could never take the normal contreceptive pill due to my migraines.
Any suggestions would be appreciated greatly!!! Thanks
"ACOG [american College of Obstetricians & Gynecologists] developed a Practice Bulletin on Use of Hormonal Contraception in Women With Coexisting Medical Conditions that allows the use of COCs in women with migraine only if they do not have focal neurological signs, do not smoke, are otherwise healthy and are aged younger than 35 years."
"In light of all these facts, we must always bear in mind that POPs [progestin only pills] are not contraindicated in patients with MO [migraine without aura] at any age, even if it is a pre-existing condition (WHO Category 1), or if it develops during POP use (WHO Category 2). Women suffering from MA [migraine with aura] can start to use POPs (WHO Category 2), but if MA starts during the use of POPs, they should generally be suspended, unless other more appropriate methods are not available."
Things to consider:
The primary concern is the elevated risk of stroke in people with migraine, which may be increased with hormone use.
The increased risk appears to be greater with migraine with aura, and it appears to be greater with combined (estrogen & progestin) pills.
Other factors may also increase stroke risk, including smoking and high blood pressure, and age (over 35 for pill users),
You are over 35 and have a history of migraine with aura.
You would, by the criteria in the link, be eligible for use of the progestin only pill, but should avoid the combined pill because you are over 35 years old.
That assumes that you do not smoke or have high blood pressure or uncontrolled cholesterol abnormalities.
In addition, there are some genetic blood clotting abnormalities, called thrombophilias, that may increase the risk of stroke. There are blood tests that can tell if you have one of those. If your primary care doctor is not comfortable ordering those, a hematologist would be the one to consult.
However, I am not sure that the cause of your pain has been identified for sure. It would be unusual to have a ruptured corpus luteum cyst with severe pain every month. Cyclic pain could be due to recurrence of the endometriosis, or it could be due to scarring around the remaining ovary. Development of a normal corpus luteum with stretching of the scar tissue could produce pain, without a true ruptured hemorrhagic corpus luteum.
It might be helpful to ask your gynecologist to do an ultrasound just prior to the time when you would predict the pain to begin again. If there is a cyst, it should be visible. It could be a corpus luteum or it could be an endometriotic cyst.
Of course, definitive confirmation of the diagnosis would require another laparoscopy, at which time a decision would have to be made concerning removal of the remaining ovary. Despite the previous surgery, laparoscopy could be performed by someone with skill and experience, preferably someone with a special interest in endometriosis. It might be possible to remove any scar tissue, treat any endometriosis, and leave the ovary, with the understanding that new scar tissue might form.
Removing the ovary has the disadvantage that you might have severe menopause symptoms and run smack against the problems of taking hormone replacement that exist with the birth control pills.
So, an option would be to try the progestin only pill and see what happens with the pain and the headaches. That is an inexpensive option, and it is easy to stop it if the headaches worsen.
If that does not produce satisfactory results, ask your gynecologist about a trial of Lupron or a similar medication. Did you take it at any point for the endometriosis? It temporarily suppresses endometriosis, prevents ovulation, and has actually been used to treat women who have migraine associated with their menstrual periods. Three to six months on Lupron should confirm that the ovary is the problem, and you could then decide whether to proceed with surgery, if symptoms return when the Lupron is stopped. Lupron does tend to cause hot flashes, since it reduces natural estrogen levels. Sometimes it is given with a small dose of progestin to help with those, but the combination of the two can increase migraine, so you should probably not do that.
After the Lupron is stopped, it might take a while for endometriosis symptoms to come back, since the medication is not curative. Due to its expense and the risk of osteoporosis from long term suppression of estrogen, Lupron is not used long term, though it is possible to give another 6 month treatment if needed and monitor bone density.
If you have frequent migraines, an option is to consider preventative treatment for them. There would be no contraindication to taking such medication and a progestin only pill together.
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