When Doctors Deny a Woman’s Pain (11disability) (11disability)

Finding effective contraception is more of a problem for many women than is generally discussed. I suffer from migraines which means that hormonal contraceptives are a real headache for me. Doctors didn’t really get it. My husband was never keen on condoms. I found a diaphragm was a good option (provided its properly fitted), although I did eventually fall pregnant with my son using it. My IUD didn’t work either and ended up making its way out of my uterus and into my abdominal cavity. When I had surgery to remove it, I already had two children so I decided to get my tubes tied - best decision ever. Your symptoms are unacceptable, please keep trying to find a better solution. If you really don’t want kids - sterilisation is a good option.

Here is a suggestion. Don't use medicine based birth control. Pills are not the only option.

The same year I was diagnosed with bipolar 2, I was also diagnosed with fibromyalgia, a neurological disease that causes wide spread body pain. This was 24 years ago when I was 40. The author is absolutely right about doctors not having an understanding of women's pain. My sexual life ended with both my diagnoses. All of the powerful psycho-active drugs I was on to control my moods completely erased my libido. Being in pain all the time left me unwilling to be touched intimately. As I had ended my relationship, I wasn't about to start a new one with all these strikes against me. In the United States, at least, there seems to be an expectation that women shall suffer, and if they suffer hell on earth, so much the better. Of course I have had compassionate doctors, but they are the exception rather than the rule.

I am a man so this article has no reference to me. Except "the doctors don't listen". This is as widespread as there are patients seeing a doctor. They want to "fix" things and have a protocol for doing that. If your unique problem doesn't fit, well, tough luck.

I have two children so maybe having my tubes tied was an easier choice, or perhaps even a harder one, as I knew when getting my tubes tied I'd not be able to replace my two children if something happened to them and I was still at an age I could have others. You said you don't want to get pregnant or worry about about getting pregnant. If you truly believe you don't want to have children some day, having your tubes tied would be the way to go. I have not noticed anything amiss with my body since I had my tubes tied, and that was many, many years ago. I don't know if doing that would affect your body because you have bi-polar. You would know medically about that.

I am deeply troubled by the apparent assumption that birth control is solely the woman's responsibility. That she must take on all the physical risks and the pain. How about a vasectomy for her partner?

I'm a disabled woman who's had both her own problems with medical providers and in finding the right birth control method. What the author is still going through is horrible. I feel as if there must be some aspect of her situation that wasn't disclosed because I'm confused. My disability isn't compatible with certain hormonal methods nor do I have the hand use needed for a diaphragm or cervical cap. So: I used the next-best method. I didn't insist on using the one that would have harmed me, and then blamed my doctors for failing me. I also noticed a confusing and unexplained issue: the author's insistence that she didn't even want to worry about getting pregnant. That's just not a realistic requirement if you're having penis-in-vagina intercourse. No method is 100% effective but your docs have not served you well if they didn't explain how combining a condom with foam increases their effectiveness such that they'd be on par with hormonal methods. It troubles me greatly that the editing allowed this muddled basic sexual health information to stand unchallenged.

Dear Ms. Simon, as the mother of a child with bi-polar disorder I understand your struggle to find a medication regime that controls your mood swings while allowing you to lead a productive life with minimal side effects. I also understand the all too common feeling of being patronized and treated like an ignorant child by medical professionals, a situation common to both female and male patients. Not every woman experiences the severe side effects you describe with the Paraguard IUD ( I used it, and it's predecessor the copper 7 for over 30 years with no side effects at all ), so it's possible your physician truly doesn't understand the severity of your situation. It's also possible that the mental health professionals treating you are unaware of the new hormonal formulations being used in contraception. I urge you, if you haven't already done so, to search out a gynecologist with really up-to-date contraception who is willing to work in concert with your prescribing psychiatrist to find an alternative that will allow you to continue to control your moods, remain child-free as long as you choose, and live without painful side effects.

I remember when I was having serious problems with cramping and pain outside my menstrual period. The gynecologist took that seriously up to a point but couldn't seem to understand that the pain was every bit as severe as I described it to be because I wasn't prostrate on the floor. What many doctors don't understand is that women will function when they are in extreme pain because they have to. No one is going to pamper us and we know it. We force ourselves to stand up, walk, and survive the day. And we do it over and over again until we can't. But most doctors don't see that. They see complaining and anger. I would guess that the medication you are taking for your bipolar disorder is interacting with whatever the IUD is releasing to prevent a pregnancy. Or maybe your body is very sensitive to the copper in which case it should be removed. What you are describing are side effects from the IUD. I'm sorry that this is happening to you. I do appreciate your struggle to find a medication that controls your bipolar disorder and to then find an IUD that works. But this IUD may not be the right one and may need to be removed. Pain is usually an indication that something is seriously wrong. Please keep on trying to find something less painful. You should not be in this much agony.

Could you ask your partner to get a vasectomy? I hope things will get easier for you.

I don't doubt the pain, suffering, and frustration from years of disappointment. However, I don't see the problem as an either/or dilemma. Managing and overcoming mental disorders is a difficult, lifelong process. Fear of losing that control is ever-present. If preventing pregnancy with hormones risks loss of control, then it should be avoided. But preventing pregnancy doesn't have to be a continuous struggle. It can be accomplished effectively, efficiently and safely. The answer is voluntary sterilization. The easiest way is a vasectomy. It is a simple, painless outpatient procedure that is 100% effective. If your partner isn't willing to go that route, ask why he is willing to put you through so much pain on a regular basis. Alternatively, tubal ligation is a more intrusive procedure, but still safe and a guarantee. Giving birth to your own child is fraught with problems. Most mental disorders have a hereditary component so you place your child at risk. Also, if hormones are a problem, pregnancy, childbirth, post-partem and breast-feeding will flood your body with both constant and erratic hormones and may well cause huge problems. Simplest option; adopt. If you're absolutely set on having a child with your own DNA, but not yet, freeze your eggs, and, ideally, freeze your partner's sperm, and convince your partner to have a vasectomy. If you do decide to proceed with your own child, use a surrogate.

It’s not that doctor’s minimize women’s pain, it’s that they like solutions. Doctors have treated me very well when dealing with rabies exposure or getting me a shingles anti-viral (in other words, clear-cut things). They have even explained to me that things that I thought were psychological were physical, and been glad to do that: “that itch you thought was psychosomatic, it’s actually blah blah and this cream will make it go away in 3 days!” Doctors love doing that. What they hate is failure. If they can’t fix it, they will minimize. I really don’t think it’s about dismissing women. But so many women’s problems are not easy to fix. Things like menstrual pain, or even things like MS and autoimmune disorders, which affect women more than men, are allusive. Now some people would say that not having solutions to these things is an example of sexism itself. And while I agree that more research money should be devoted to menstrual pain and the like, it’s important to keep in mind that research hasn’t solved the common cold or allergies either. It’s important to keep in mind, too, that women live several years longer than men — so this lack of research resources is not affecting everything about our health.

How about tube ligation? Or just use a condom and have an abortion if it fails. Seriously, I don’t understand the point of this essay. Medication often has side-effects. Medication interaction can often create unexpected issues. But science is not magic. Not every problem has a solution. I find it hard to blame doctors who don’t take the author’s complaints seriously. I don’t either.

I have bipolar II and am on medication which works, there are only 2 meds I’m aware of for bipolar II. The first choice is lamotrigin (I’m fortunate that works for me as there are no side effects) and the alternative is lithium. I had an IUD (mirena) with hormones and no issue with meds. And agree with others that a diaphragm is effective if used correctly.

It must be horrible to have to choose between birth control that makes your life hellish and psych meds that prevent you from suicide and severe mania.However,your diatribe against psychiatrists and medical doctors who don't take a holistic approach to your problem is unfair and unreasonable.Often there is no"magic bullet" and the patient has to decide which is the best option for her/himself. This has nothing to do with physician's minimizing a woman's pain and everything to do with taking personal responsibility for making a difficult choice.By requiring near 100% effectiveness, you are eliminating other methods of non-hormonal birth control that would end your physical pain. If you can work on trying to be comfortable with that, your dilemma would be resolved.

Most people are commenting on other bc methods but the author's larger point is an extremely important and critical one: doctors frequently don't listen to women about symptoms and researchers especially don't seem to care enough to improve the options that exist. Women or the mentally ill are told to suck it up, to not be so hysterical, to just accept the situation and be grateful. An incredibly high percentage of women use some method of birth control. And many if not all of those birth control options have side effects that cause women problems on a day-to-day basis. Why hasn't that been improved? Similarly many psychiatric drugs have tremendous side effects - some so bad that people will forego treatment rather than suffer the side effects. Many of these drugs have gone unexamined or unimproved for decades. I wonder, if Viagra caused immense pain (or bloating, or vomiting, or digestive distress, or migraines in significant numbers of patients like birth control does) do you think the researchers would have gone back to the drawing board? I sure do. Keep in mind that for years doctors said there were no symptoms for ovarian cancer. Turns out there are actually quite a few! Women had been reporting those symptoms to their doctors but doctors simply dismissed them as hysteria and over-dramatics.

Yes, there are other options for birth control - but not options as fail proof. Diaphragms are great, if you put them in. What if the author is in the grips of mania (and hypersexuality is often a symptom of a manic episode) and is unable to use barrier methods? As for tubal ligation, it is incredibly difficult to persuade doctors you are serious and when one is mentally ill your opinions are given even less weight. Plus many Catholic health groups refuse to perform tubal ligations and Catholic health groups are increasingly the only options in many areas of the US.

I see nothing in Ms. Simon's article to back up that sensational headline about doctors denying a woman's pain. By her own accounts the doctors are not denying her pain. She simply doesn't like the reality of their solutions. Blaming her doctors for the choices she herself is making is not the answer. Maybe it's time to stop being so stubborn and try something else.

A diaphragm plus spermicide plus condoms. And it also makes me wonder why having sex is worth this amount of pain.

Dear Katie, Your struggle seems overwhelming. Why not remove IUD and have your tubes tied? Go to a female gynecologist who might have better solutions. Make your partners use birth control. Also the diaphragm with spermicide sounds like a good solution. And then there’s always abortion.

I agree, use a diaphragm. Skip the condoms if you like. Life is unfair in many ways, including assigning you to have bipolar disorder, but you are right—you are one of the lucky ones. I lived in a time before medical abortion, before Plan B, when birth control pills contained much higher doses of hormones than they do today, in the days of the infamous Dalkon Shield (google it). I am sorry that there are no options that you consider perfect, but you do have options and from the perspective of women my age, you are exceptionally lucky. There’s been so much progress—we need more, so let’s work and hope so that the next generation has even better options.

I'm not sure why this article is listed under "disability," as it seems to be a situation that can be remedied. IUDs bring with them horrible pain, and are not 100% effective. At that point, the choice is between terminating a pregnancy--and I'm not sure what. I don't know if it's even safe to continue a pregnancy with a foreign body present in the womb. Nowhere does the writer mention the diaphragm, which has great efficacy (although not 99%). I speak from experience, never having had an unwanted pregnancy using this method. My mother had equal success. When combined with the condom, the efficacy increases, although I never used it in this way. I am puzzled as to why anyone would choose to live knowing that that pain will inevitably come monthly, and I would be concerned that over time some permanent damage could be done to the anatomy. But it's an individual choice.

Katie, I had pain and, eventually, an ovarian cyst and "cellular abnormalities " on my cervix by the time I had my IUD removed. At least, the cyst required surgery, during which the doctor removed one ovary and a lot of endometriosis. He said that it had been constricting my Fallopian tubes and that I would have a short period when I could get pregnant, after which the endometriosis would grow back. After a period of abstinence, I had unprotected sex for the rest of my life subsequently without pregnancy. I had somewhat painful periods with back pain (alleviated by submersion in water!) until menopause. I also never took hormone replacement. I think you might explore the possibilities of endometriosis. It could be that you might not need birth control.

I am also unsure why Simon blames her doctors for "ignor[ing]" her. Based on what she's told us, it seems that rather than minimizing her pain, her doctors acknowledge it, but are unwilling to prescribe powerful painkillers when removing the IUD is the most obvious solution to her pain. I am actually comforted by the idea that doctors are unwilling to prescribe such painkillers given the opioid epidemic in the US that began with such over-prescribing. I understand and sympathize with Simon's anxiety towards physical birth control and agree that doctors must take women's pain seriously, but the solution is not to keep something that has clearly been causing her agony (for six years!) and add even more medication to her regiment. There are three other issues at play here: 1) the lack of easy, effective (as effective as an IUD) physical or otherwise non-hormonal birth control; 2) the lack of viable hormonal birth control for men; and 3) the complete dearth of birth control advertised towards men and the general "I'll just slap a condom on it and my job is done" attitude that many men have towards sex and pregnancy prevention. I appreciate Simon's message of speaking up and being heard, but I would argue that she should focus her energy elsewhere rather than advocating for even more medication in an already over-medicated society.

Try a diaphragm with spermicide. Way more effective than condoms, and NO PAIN.

I understand the thesis of doctors not understanding wmens health and mental health and where the intersect. However, Having worked assiduously to avoid pregnancy I don’t understand the choices being made. A diaphragm and anti spermicidal foam have a very high success rate. Yes, it means, and shoukd mean, involving ine’s partner in the process, but why not give those a try?

Having had greater then 13 weeks of pain, you qualify for medical marijuana in NY As a retired Ob/Gyn and now pot practicioner, this might be helpful for you. By working with a knowledgeable clinician, your custom program would address your specific issues. Worth trying

I am a psychiatrist and am a little confused by this piece. It sounds like Ms. Simon's present birth control method is destroying her life, although she is heroically trying to make it work. I don't know how she does it! However, she is right: she is trading one hell for another. She is caught between the Scylla of bipolar disorder and Charybdis of needing birth control and the management of one is incompatible with the other. If you want the IUD out, get it out! If you NEVER want to get pregnant, have a tubal ligation. If you aren't sure, in addition to the nonpharmacological methods suggested by others, also try keeping a temperature chart so you know when you are ovulating and avoid penetrative sex when you are most likely to conceive. Remember other ways of enjoying intimacy with your partner. Consider mindfulness and CBT and tai chi as complementary methods of dealing with intractable pain. Sometimes the solutions aren't much better than the problems, and you seem to be caught in that bind. I am sympathetic to your pain and your fury at the unfairness of your life. As a physician, I also feel defeated when I have to tell a patient there is no good solution to their problem. But maybe try removing the IUD and dealing with pregnancy prevention as I suggested above.

Get a clue: the choice is NOT between intolerable pain and effective birth control. You may WANT an IUD but a two barrier methods plus nonoxynol 9 is effective. Just not convenient.

Dear Katie, I have practiced psychopharmacology for almost 25 years and have treated women in your difficult position. The comments so far are useful but maybe not so much the medical advice you have been given. Only progesterone affects moods, not estrogen. There are now pills with very little progesterone. The reactions are very variable and you will know what they are after one cycle. Women like you also often have terrible PMS, which is successfully treated with oral hormones. Unless you have already tried it you absolutely should. Chances are it will be fine and if not stopping it will stop the reaction (but it must be caught early).

As some commenters have already suggested, Me Simon and her partner could combine use of the diaphragm with that of use of condoms. Ms Simon does not mention whether she has considered tubal ligation, which would obviate the need for further birth control altogether. I realize she did not discuss in her essay whether she wants to hold open the option of having children in the future, and also am not versed in the possible medical/ mental health implications of tubal ligation itself as regards the resulting hormonal changes in a person with severe bipolar disorder; I'm just posing the question.

Ms. Simon, it's not clear to me whether you want children at all. Should you not -a perfectly logical decision - why not try having your tubes tied? It's simple, effective and no side effects. I had this done when I was 39 and have never regretted it.

I’m not sure I understand the vitriol for doctors. Maybe what they’re saying is right? It sounds like you’ve spoken to a large number of them.

A combination of condom use, diaphragm use, the pull-out method (surprisingly effective if done correctly) and the rhythm method should make it extremely unlikely that you get pregnant when with a supportive partner. Plan B is a good fall-back option in the event of unplanned/unprotected sex. Keeping the Paragard in and dealing with chronic pain and the serious side effects of medications used to control that pain seems like a terrible idea.

Go to Florida and find an overly ambitious internist who's opened up several offices and has spread himself very thin, and whose patients are mostly senior citizens. He will prescribe you opiods at the drop of a hat, if that's what you really want. Don't expect your insurance to pay for any other alternative types of pain relief, such as acupuncture, massage, or somatic treatments. And don't expect to be able to easily qualify for medical marijuana, even if your state has legalized it. Conservative lawmakers are doing their best to block access by restricting it to people who have rare terminal diseases. The medical establishment and our healthcare system are broken, so it isn't surprising that you're having so much trouble. There are a few female doctors who work from a holistic base, so try asking friends if they know of any. There are two in Austin I can think of, off the bat. If you live in a large city, you should be able to find one. If you don't, then again, you're up a creek. Diaphragms are not really effective unless used consistently and properly, nor are condoms. I know too many women who've had to have abortions due to the failures of these methods. Plan B does seem like a reasonable alternative for you. And don't listen to the creeps who think you should simply abstain. Talk about mental illness -- those people are truly nuts.

If used consistently and correctly, condoms are 98 % effective.

My wife used a diaphragm for decades, and we paid a bit of attention, not very much, to the time of the month. It worked well.

Dare one mention tubal ligation as a possible solution? I'm not entirely clear as to whether Ms. Simon would ever wish to conceive? I knew early on that I did not want children and I have had no cause to regret that decision. I have never been pregnant and managed with conventional birth control methods but what I wanted was a tubal ligation at age 30. Doctors kept telling me I'd change my mind and I kept telling them that was not their concern but my assurances fell on deaf ears and I never had the procedure. However, it might offer relief to Ms Simon if she does not wish to have children in future. I saw no reference to it in her article and wondered if she had considered it. I offer this suggestion with the greatest respect. Some doctors maintain that tubals can be reversed. It might worth discussing the subject with a doctor who has had experience with reversals. Just a thought...

I am sorry for the suffering of this young woman. But it seems fairly obvious that her doctors have not offered her the pain medication she wants because they have judged it to be too dangerous, especially when taken every day for years on end. (Even OTC pain relievers are fraught with risk, when taken more than occasionally.) Doctors who give pain medication on demand end up in jail. Families of their dead patients call them murderers. I must admit that I also do not understand why the author and her partner do not refrain from intercourse until they are ready to accept the possibility of pregnancy that accompanies the careful use of barrier methods.

As a parent of a child who had a serious illness and disabilty, I understand your situation. But the doctors are simply giving you the facts. They cannot change those facts, as much as they may empathize with your pain. All of the available options stink as they force your to choose between preventing pregnancy and your health. There is no getting around it. We all have those terrible choices to make where doctors have no perfect option to offer. I had to make those choices for my child. BTW- I was also unable to physically tolerate birth control with hormones. Condoms were 100% effective for us and had an added benefit- unlike many of my friends who needed fertility help after being on other methods, I got pregnant 1 week after pulling the goalie.

Another problem, once you've been "diagnosed" as someone having a mental disorder, most doctors view you through that lens, so often times, unless you find a really good, empathic physician, your physical pain is thought, in part, emotional.

It’s such an outrage that contraception for men has never been a research priority, and promising efforts have been deemed unacceptable for their side effects. It’s left to women, alone, to manage all this risk, pain, and expense.

There's also the option of the cervical cap.

Twenty five years ago I was thrown into the mental health system with a major depressive disorder. It rapidly became clear to me that I had to become my own advocate to prevent being swallowed up by the medical/mental health system. I taught each psychiatrist that I was not a patient-a compliant, dependent person accepting anything from the physician. I taught clinicians how to work with me. Katie makes the point of having to be her own advocate. This is true especially for women who are treated like Katie has been. It is imperative that every woman take control of her health care and be one's own advocate. I was lucky to find a psychiatrist who was unconventional-creative with medication so that I tiptoed thru the minefield of side effects and efficacy. I hope for you ,Katie, that you find that physician who will work with as a part of a team to find what works for you. You may have to teach that clinician first. Good luck.

Perhaps there is too much of a reliance on Western medicine to cure our pain. Maybe there are alternatives that don’t involve pharmaceuticals but do offer ways to live with the pain, and perhaps diminish it in the process, so that one can move on. Acupuncture, Reiki, massage, and meditation immediately come to mind, but I’m sure there are others.

I agree. The medical establishment - humans, both male and female - have great difficulty getting past their inner turmoil about women's pain. And now that they are grappling with their willingness to be opioid drug pushers (pretending to be shocked by the outcomes - and not admitting that it was yet another way to avoid connecting with pain of their patients), hospitals have immediately set forth new guidelines about treating pain. Those guidelines don't set out different standards for men and women - and yet they are clearly being carried out in a way that ignores women's pain in a vast swath. As part of a group monitoring anecdotal evidence from both medical care givers and patients, the reports are staggering. Whereas men are still prescribed opioids rather freely, although within the new guidelines for pill amounts, women are told their pain will subside without medication and if not, suggestions are to take OTC medications. In many cases those suggestions are healthier options, but the missing ingredients are dangerous. When women report pain to their doctors, few are offered options to work with 'pain specialists' who provide full clinical evaluations and follow-up. Instead, the reports of pain are all but brushed aside and women learn, as this author has, to stop reporting it. And that can lead to death. Outside of the medical community, most understand: when you are with someone who is in pain - try to alleviate it. If you don't, they will continue to suffer.

I too suffered for many years with mental illness exacerbated by hormonal birth control. When I first went on the pill, in the 1970s I found myself standing on the railing of a bridge contemplating suicide. I became pregnant using both barrier methods and an IUD. Finding a solution to this issue is extremely difficult. It is also very common problem, 10% of women report some form of depression. However, I'm not sure why Ms Simon is blaming her doctors. She has a complex medical profile, combined with a rigid idea of treatment, and is asking them to prescribe medication with serious side effects rather than pursue other options. The current variety of hormonal birth control comes in so many flavors that it is very possible that she could find one that did not effect her mood. Low dose pills, vaginal rings and B-Yaz (which can have positive effects on some forms of depression) are all options. Barrier methods, carefully and consistently used are another option. Their low success rates are due to inconsistent or improper use. I know several young women with serious mental health issues and all have found satisfactory solutions to this issue, though it requires time, effort and flexibility. Ms. Simon's anger at having to make difficult choices is understandable, turning that anger on her doctors is not.

Sometimes, despite the advances in medicine there are no answers. Sometimes you have to choose one or the other. This is a conundrum not limited to people with mental illness. Long term use of NSAIDs can have significant side effects and you aren't the only person with chronic pain who has a hard time getting a narcotic pain reliever due to the opioid crisis. I would second what Birdlover suggested. Doctors can help but they can't solve all of your problems, you need to be an active participant.

Suggestion: Combine the careful use of condoms with the careful use of a diaphragm (which requires a spermicidal foam). Last I knew, these methods combined have an effectiveness rate at or very near the Pill with little or no side effects. The additional advantages include protection against STDs and the active involvement of both partners; there is no good reason to require women alone to shoulder the responsibility of birth control.