painful sex

Thirty Years of Painful Sex Resolved With Pelvic Therapy – An Interview

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In a previous article (Sexual Pain: It wasn’t the ovarian cyst), I presented the clinical case of a woman in her 50s who had experienced painful sex for 30 years. This patient had seen scores of physicians, received multiple diagnosis, and had two surgeries to try to address her pain. Unfortunately, her pain with sex continued.

Over the years she had received diagnoses ranging from endometriosis, to fibroids, to ovarian cysts. She had surgery to remove endometriosis and later on also a hysterectomy. Her pain with sex, known as dyspareunia, continued. She experienced the pain with deep vaginal penetration, that felt like stabbing deep into the right side of her pelvis, her back, and up her right side. Eventually she was experiencing this pain throughout the day, as well as during sex. In addition she experienced digestive difficulties, with no explanation to be found. She says, “Nothing was changing, and I gave up. I pretty much gave up and said to myself ‘this is what I’m dealing with.’”

The mentality of her doctors was, in her words, ‘suck it up, buttercup’. She describes how relationships can start to drift apart when sexual pain is a chronic problem. So, she decided that she would just have to live with it, and lied to her husband about the frequency and intensity of her sexual pain. Eventually, after so many years and so many doctors, she lost hope. Fortunately, though, she never gave up.

With luck and through an indirect path, she was introduced to pelvic floor physical therapy and finally, after a series of treatments, found relief. She explains,

I gave up. I thought I had tried, and I had googled, and I had looked, and all the doctors… And I want to put the onus on other women, the female physicians that I saw! No one talked about physical therapy ever, ever.

In the previous article, I discuss the clinical side of her case. In this interview, she tells about the personal side, her many years of pain, doctors, and finally how it felt to find relief. She gave permission for these articles and interviews because she wants other women to know that it is possible to find relief, even if it’s been many years of pain. She doesn’t want other women to give up hope. She stated it best, saying

Put yourself first, make sure that you’re listening to your body, doing what’s good for your body, making sure that you’re going to the doctor, getting checked out, not taking no for an answer, or not taking that first answer. Look at how many doctors I saw… 8? 10? Who knows how many different OB GYNs or just GYNs that I saw? And none of them gave me that answer that potentially could have avoided surgery. But the goal is to listen to your body and make sure to find the answers. And know that it’s okay to question a physician. It’s okay to question, right? As long as there’s respect there, the physician should be open to you asking questions.

Painful Sex Resolved With Pelvic Therapy

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Vaginismus: Inability to Tolerate Vaginal Penetration

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“It’s all in your head.” “Just relax.” “Have a glass of wine before sex.” These are direct quotes, from uneducated and insensitive gynecologists to my patients when they try to open up about the difficulty they are having with sex. Patients leave these visits feeling like they are crazy or defective. Some patients have gone decades in sexless marriages, not knowing that they had a diagnosis for which treatment was available.

Vaginismus is a severe, reflexive tightening of the muscles at the vaginal opening (pelvic floor muscles) that prevents penetration. Someone with vaginismus often cannot tolerate the use of a tampon, internal gynecologic exam, or penetrative sex. In my experience, this physical tightening is often coupled with a feeling of upset, avoidance, or what I call the “ick” factor. This is more than just tight pelvic floor muscles- this is a protective spasm that completely prevents penetration. Attempts at penetration are upsetting and painful, and both the patient and their sexual partner are at a loss as to what to do. Physicians performing pelvic exams are often insensitive to the condition, believing that the patients are being overly dramatic, uptight, or difficult. Emotionally this only makes matters worse, at a time when patients are especially vulnerable.

There is value to having a name for something because it makes it possible to have clear conversations about it. “Primary” vaginismus means that the person has never been able to have penetrative sex, and has probably never been able to use a tampon or have an internal gynecologic exam. “Secondary” vaginismus indicates that the person has had normal sexual function in the past, but developed vaginismus as a result of some change in their lives. Vaginismus may be related to a history of trauma, or the patient may have no memory of a traumatizing event. It might be related to a sexually or emotionally repressed background, or not at all. A history of pain, surgery, cancer treatment, or hormonal changes may precede secondary vaginismus.

Pelvic Floor Dysfunction and Vaginismus

To understand the diagnosis it is helpful to have a little background on the muscles in that area. The “pelvic floor” is a group of muscles located in the area of the genitalia- it works to control urination and defecation, to support the organs against gravity, to help with core stability and postural support, and to participate in sexual function. It often works completely reflexively, whether it be to hold in urine when we cough or laugh, to relax to have a bowel movement or to rhythmically contract and relax during orgasm. Just like any other muscle in the body, when it perceives pain or danger it can also go into spasm. With vaginismus, this protective spasm closes off the vaginal opening.

The spasm is completely outside of the person’s control and can be upsetting, painful, and frustrating. It can be inconvenient, in the case of being unable to use a tampon, and can interfere with someone’s ability to receive medical care, in the case of a gynecologic exam. It can prevent women from consummating a marriage or getting pregnant naturally, interfere in intimate relationships, and can cause significant emotional distress.

It takes a great deal of courage to reach out for treatment for vaginismus, and any patient seeking care deserves to be treated with respect and with sensitivity, and after fully informed consent.

In my practice, we treat vaginismus from a multidisciplinary perspective and our patients have great success. Treatment may be a slow process, depending on the individual patient’s situation, but with consistency, it is possible to achieve normal sexual function. We suggest a multimodal approach, which includes one or more of the following: physical therapy, medical review, and potentially medication, counseling (which might include cognitive behavior therapy or EMDR), and sex therapy.  I will discuss the physical therapy side of things and have invited a gynecologist as well as a sex therapist to review their approaches as well.

Physical Therapy for Vaginismus

It is normal for muscles to tighten in response to immediate pain or danger, but with vaginismus, the muscles spasm in the absence of these things. Physical therapy focuses on re-educating the muscles to understand that they don’t need to spasm in response to a non-dangerous situation, such as consensual sex. We accomplish this using dilator training, muscle relaxation techniques (both at the pelvic floor and also in the core, spine, and hips), and lots of education. Let’s talk about each one to understand how PT can help heal vaginismus:

Dilator training is not at all what it sounds like! Rather than trying to “stretch”, it involves progressive desensitization of the vaginal opening. It is simple to do and can be done at home on your own. You would start with a small dilator and simply rest it at the vaginal opening. Over time the area becomes less sensitive to touch and the muscles will relax. You might then insert the dilator just one or two millimeters, until you feel tightness building again. At this point you would stop and wait again, allowing the nerves and the muscles there to become acclimated to the sensation. Throughout the process, you can be doing relaxation techniques given to you by your PT or your counselor. It is very slow, very gentle, and always at your own pace. Consistency is key. Over time you progress through larger dilators until you are able to reach your goals, whether they be tampon use, or sexual penetration.

Muscle relaxation techniques might include breathing exercises, hip and back stretching, biofeedback training, and manual treatment provided by your physical therapist. People with vaginismus often have other muscles that are very tight, such as in the buttocks, abdominals, and inner thighs. By helping to relax these muscles the pelvic floor can also be facilitated to relax.

Lastly, education is incredibly important. Understanding your anatomy and your diagnosis is empowering. You might want your sexual partner to come with you for a session to learn about your diagnosis and even learn to help you with your self-treatments. Communication with your partner is learned and practiced in these sessions. Strategies for progressing to penetrative sex can be discussed, and optimal sexual positioning for your particular needs can be determined. Strategies for engaging with gynecologic exams and physicians can be reviewed. Tips for tampon use or other personal goals can be discussed. Knowledge is power.

While physical therapy can provide self-care training (dilators), muscle relaxation techniques, and education, it works best in conjunction with gynecologic care and psychotherapy.

Gynecological Care

At the very least, every patient needs to be evaluated to determine if there is an underlying condition that needs to be managed, such as infections, skin diseases, or hormonal changes.  These underlying conditions must be treated in order for vaginismus to be successfully resolved. Your physician can also offer medical interventions that may speed your recovery.

Dr. Tessa Krantz, a urogynecologist specializing in non-surgical management, explains the variety of medical interventions that are available to patients:

  • Oral medications can be used to manage stress and anxiety associated with an inciting event, such as a benzodiazepine (Xanax, Ativan) for short-term relief of anxiety, or Serotonin Reuptake Inhibitors (SSRI) medications to assist with overall anxiety.
  • Vaginal suppositories containing a variety of medications may provide a more localized treatment directly to the muscles of the pelvic floor. Vaginal diazepam is frequently used to treat pelvic floor tension myalgia and pelvic pain associated with Vaginismus. Vaginal administration of diazepam results in lower peak serum plasma concentration than oral administration.
  • Compounded topical creams may assist with pain management if needed. These creams may include medications for neuropathic pain such as ketamine, gabapentin, clonidine, and lidocaine.
  • Trigger point injections are injections of a local anesthetic to the muscles of the pelvic floor that are tightening and causing pain. Dry needling may also be an option for relieving these trigger points. Injections of this type can be done in the office, in an outpatient setting. After a trigger point injection, a patient may go home and actively use her pelvic floor muscles. These are generally safe and provide significant pain relief within 24 to 72 hours of treatment. Risks are low, the most common is temporary numbness around the injection site and bleeding.
  • Botox is a neuromodulator that relaxes muscles when it is injected- it may be injected into the muscles of the pelvic floor to prevent them from contracting. This may assist to break the cycle of fear/anxiety, muscle tightening, and pain. Injections of this type are typically done in an operating room setting. Results are not permanent and can last from 4 months to a year and may require more botox injections in the future. Side effects may include pain and discomfort at the injection site, swelling at the injection site, and urinary tract infections. However, these risks are low.

Counseling and Sex Therapy

Dr. Sally Valentine, a licensed clinical social worker, and AASECT certified sex therapist explains that the role of sex therapy in clients with vaginismus is to help reduce the psychological components contributing to pelvic muscle spasms, or impacted by the condition, and to work toward a positive and pleasurable sexual template for the client to move forward with. This includes addressing issues that may have developed or co-existed as a result of vaginismus such as anxiety, depression, hypervigilance around sexuality or sex, avoidance of sex, fear of penetration, sexual fear, obvious sexual pain (inherent in the diagnosis), sexual shame, relationship conflicts, sexual relationship decline, fear of intimacy, unprocessed sexual events, such as sexual assault and/or trauma, or even traumas experienced in the process of finding the correct diagnosis.

She describes how she structures treatment around a few key steps, starting with a thorough history taking and using the PLISSIT model, which many sex therapists use to help organize their work:

  • Giving the patient permission to speak about all aspects of her situation and ordeal. This is an opportunity to talk about all her feelings, confusion, pain, hurt, frustration, anger, rage, resignation or hope.
  • Providing information. This starts with understanding what the client already knows, and then filling in the gaps, as well as correcting misunderstandings of myths. This can help demystify the condition, improve sexual communication, and provide resources.
  • Providing specific suggestions, such as breathing exercises, journaling, stress reduction techniques, and sensate focus exercises.
  • Providing intensive therapy as needed. This might include cognitive behavioral therapy to address cognitive distortions, emotional dysregulation, or maladaptive behaviors. It might include EMDR or hypnotherapy, which are modalities that focus on healing from trauma.

Each specialty, physical therapy, gynecologic care, and psychotherapy/sex therapy, has an important role in treating vaginismus. While it can be challenging to find expert care providers, we hope that this overview has given you confidence that you are not alone in your experience, and that there are proven treatment methods available to you. Whatever your goals are, whether it be to participate in penetrative sex, use a tampon, or go to the gynecologist, it is possible to achieve them.

To connect with Dr. Krantz, you can reach out through her website at Women’s Home Health.  To connect with Dr. Valentine you can find her information here. Dr. Wakefield can be reached at Well Springs Health.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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Love Hurts – Sex with Endometriosis

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 “Bolts of electricity shoot around my abdomen and pelvis and down my leg as I lie on the pillow-topped hotel mattress, attempting in vain to remain silent. My husband’s arm, heavy from sleep, is draped over my aching body. I turn to look at him as he snores softly, blissfully unaware. No one told me the wedding night the night I dreamed about, would end with unbearable pain. Is this normal? Should it have felt like shards of glass stabbing me while moved inside me? I try not to let him hear me crying as I close my eyes and try to ignore the sharp electric-like currents terrorizing my body…

There is no one to speak to. I am the sole occupant of a vast and desolate island on which my innermost secrets cannot be shared, not even with my husband. Who to speak to? What to say? What to do when the event that should bring pulsating all-encompassing passion brings only excruciating pain instead? Who to tell when the one act that should create ecstasy and bliss causes pure agony?  I should adore the sense of unity I feel with my husband when we are together, treasure each second that my body fuses with his. But, instead, all I feel is the white-hot sear of pain when he enters me, the blackness of despair when I know that I cannot share my pain with him and the blushing red of embarrassment when he knows I am not being honest…

How can I share the feelings of torture that overwhelm my body when he is inside of me? How can I let him know that he, my beloved husband, is the cause of my misery? How can I share with him that his body alone creates immense wretchedness in mine. I will never do that to him. I will never make him aware that he is the source of the agony that rocks my body through and through. Instead, I will live with this agonizing, heart-wrenching secret of mine. This secret that isolates me, that creates a fissure so large between me and my husband that I wonder if we will survive as one. And I will continue to allow my body to be exposed to the beatings and abuse that are, in reality, tender loving touch.” 

Sound familiar anyone? Can you relate? Do you know what this girl means when she describes the pure agony that consumes her as she tries to have sex with her partner? Or the emotional turmoil she experiences as she tries to hide the pain from her partner? Well my friends, that girl is me, writing in my journal for the first year of my marriage.

You see, for many women with endometriosis, myself included, sex is not the erotic, passionate and pleasurable experience that we all wish it to be. In fact, according to a recent study in Italy, more than half of women with endometriosis experience dyspareunia, or genital pain associated with sex. Two types of dyspareunia exist. The first type, called superficial dyspareunia, is when the pain is felt at the opening of the vagina, and the lower part of the vagina. This pain is usually felt during the act of penetration and can easily be diminished by ceasing penetration. The second type, called deep dyspareunia, is felt deeper in the pelvis and thighs and can last for hours or even days. Women who have endometriosis, specifically recto-vaginal endometriosis and endometriosis on the cul-de-sac experience this type. There are many medical causes for dyspareunia other than endometriosis, such as vulvodynia, vulvar vestibulitis and interstitial cystitis. While this condition has historically been defined as a psychological issue, more recent treatment approaches lean towards the theory that dyspareunia is a combination of both physical and psychological causes. (More on dyspareunia theories).

In women with endometriosis, physical pain during sex is due to the presence of lesions found all over our insides, specifically behind the vagina and in the lower parts of the uterus. Having anything inside of us pushing or stretching those growths causes sheer agony, also described as burning, stabbing or deeply aching pain. It is intolerable, enough to make us scream, cry, or even throw up. This pain can start as early as the beginning of penetration and last up to 24-48 hours later. Women with endometriosis who have had a hysterectomy or who are going through hormonal treatments may experience pain due to vaginal dryness as well.

Dyspareunia has also been connected with more negative emotional attitudes towards sexuality as a whole. Studies have found that complaints of pain with sex are associated with low physical and emotional satisfaction, as well as decreased general happiness. Depression and anxiety were found more often in women with dyspareunia than control subjects.

Experiencing dyspareunia causes a loneliness inside of us that is worse than the most agonizing pain. Aside from simply not being able to connect sexually with people that we care about, we often feel compelled to hide our feelings from our loved ones so as not to hurt them. We would rather harm ourselves than tell our partners that they are hurting us. Keeping that a secret from them isolates us terribly, and fills us with a guilt that eats at our hearts. We are also consumed with incredibly strong guilt stemming from our inability to allow our partners the pleasure we know they deserve.

Fear of rejection is also a large part of the emotional pain associated with sex. We worry that our pain will cause our partners to reject us, whether because they have sexual needs that are lacking, or because they don’t want to cause us any harm. Ironically, many of us have experienced the strange situation in which we find ourselves begging our partners to have sex with us even though we know we will suffer.  Aside from the pain experienced by those of us actually suffering with this disease, it is also important to mention the emotional anguish that our partners who don’t have endometriosis go through. They too have feelings of rejection when we refuse to have sex, and can sometimes feel insecure about the relationship. Unfortunately, their need to be loved and love another is sometimes inadvertently ignored.

Due to endometriosis-associated dyspareunia, sex is often a dreaded nightmare fraught with worry. We worry that we’ll have unbearable pain if we choose to have sex and that we will offend our partners if we choose not to have sex. We worry that when we do want to have sex our partners will refuse for fear of hurting us. Instead of bringing us closer to our partners, sex puts a strain on the relationship that is hard to overcome.

This post was published previously on Hormones Matter in January 2013. 

 

Love Heals: Improving Your Sex Life While Dealing with Endo

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After re-reading my previously posted article (Love Hurts-Sex and Endometriosis) about the emotional and physical pain women with endometriosis experience during sex, I found that I was a little disappointed in myself. Yes, love can hurt. Endometriosis-associated dyspareunia, or painful sex has the potential to be an physically agonizing and emotionally heartbreaking experience. But did I really have to make the article sound so negative? Did I have to end with the message that there is no way to improve sex for women like us?

My friends, if you are like the other endo-sisters I have out there: tough, resilient and irrepressible, you won’t let dyspareunia destroy your intimate relationships. Instead, you will work tirelessly in search of ways to fix this excruciating problem. You will not stop until you have spoken to every woman with endo, read every single article, or spoken to every professional out there in the hopes of figuring out ways to ease this struggle.

I am no different than you. I have read articles, spoken to fellow suffers, and attended classes by therapists who specialize in this very issue.  I have even gone to my own sex-therapist who has worked diligently with me to bring the passion and peace back into my bedroom.  I can’t tell you that all is perfect in that intimate place between my sheets. But I can tell you that the following ideas and advice that I am going to share with you have reintroduced intimacy and sexuality back into my life in a most wonderful way.

Communication

Ladies, this one word is the key to maintaining a healthy relationship, whether you have endometriosis or not. While communication seems like a simple, straightforward task, it is often not as easy as it seems. We fear offending our partners, or saying things we don’t mean.

Regardless of all of our anxiety, it is imperative to express to our partners what sex makes us feel like, both emotionally and physically, and what our concerns are regarding performing and/or abstaining from sex. On the flip side, we need to make sure we listen to how it all affects our partners as well.

Try this exercise: take a piece of paper, split it down the middle with a line, and write your name on one side and your partner’s name on the other. On your side of the paper, write down all of the ways you feel pain during sex is affecting just you:

  • Do you miss feeling like a sexual being?
  • Do you miss being able to convey your love in a sexual manner?
  • Do you miss feeling sexual pleasure?

Then, on your partner’s side, list the concerns you have regarding your partner’s feelings on the matter:

  • Are you afraid he or she will leave you and find someone who can have sex more easily?
  • Are you worried he or she will feel rejected by you?
  • Do you feel guilty that you might be making your partner feel like you don’t love him or her?

Have your partner do the same exercise and compare. When you finished comparing, try this follow-up exercise:

Write down three acts that you feel your partner can do to help you with your concerns. For example, if you miss being a sexual being, maybe your partner can be cognizant to mention how attractive you look more often. Or if your partner worries that you don’t love him or her as much as you used to, maybe you can make more of an effort to say “I love you” more often.

It’s Not All about Penetration

There are plenty of other sexual acts that can be used to bring us closer to our partners. Research shows that many couples in which one of the partners experiences dyspareunia tend to stop being sexually interactive at all. This causes an unhealthy and even harmful distance to grow. Sex and intimacy manifest in many different ways, and there is no reason to stop touching one another just because penetration hurts. Hand-holding, kisses, hugs, massages, and even just a light, sensual touch on the hand as you pass by your partner shows how much you care and prevents the physical relationship from becoming a thing of the past. In addition to all of those little gestures, mutual masturbation is a great and important way to pleasure your partner and connect sexually without intercourse.

Try New Ideas

There is more than one way to have intercourse. If sex hurts in the missionary position, try a new position. If it feels dry and chafing, try KY, or an alternative lubricant. There are plenty out there to choose from so find one that is right for you. You can even pick one out with your partner as a sexy bonding experience.  While experimenting, don’t forget to stay calm and open-minded and try not to get frustrated. It can be a very fun and intimate experience if you let yourself enjoy the process and worry less about the result.

Timing is Key

There are some women who find that they are more sensitive to pain during specific times of the month. For example, some women feel that sex during ovulation causes more pain than sex during the time right after they end their periods. Keeping a log to identify when those times are is a great way to be proactive about minimizing sex pain.

Mind and Body Readiness

Vaginal dryness is one of the key reasons why women feel pain during sex. A woman whose mind and body are not ready for sex due to fear of pain or lack of foreplay will not produce natural lubrication and will thus feel more pain on penetration. Increasing foreplay and meditation are two ways to prepare both the mind and body for sex and increase lubrication.

Ask for Help

Don’t try to deal with painful sex on your own. A sex therapist can help you work through your emotional issues and give you more suggestions on how to improve your sex life. It might feel a little intimidating to share your personal issues with someone else, but a therapist who is trained to deal with sex issues has seen and heard it all and will be more than happy to help you.

While it might seem a little overwhelming to try to tackle such a large and emotionally charged issue, you owe it to yourself to try to improve your sex life. Don’t forget that you don’t need to try all of the suggestions at once. If you can, discuss with your partner and pick one or two ideas that you feel you can try to implement. It’s not about perfection; it’s just about taking the time and putting in the effort. If anyone can do it, you, my endo-sister, can. You are stronger than you know.

Endometriosis and Adhesions

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In 2007 when I was finally Diagnosed with Stage IV Endometriosis I wasn’t expecting anything but “a diagnosis”.

When I spoke to the attendee after my surgery she said that there was massive scar tissue from a previous bowel surgery I had when I was seven years old. It had worked its way all the way up to under my ribcage. It took an hour to just cut that all down and that was just part of my Endo surgery.

My entire pelvis was frozen solid with adhesions. Everything was wrapped around my uterus including both of my ovaries (kissing ovaries). To this day I always find it funny that through the 10 or so ultrasounds and transvaginal ultrasounds they kept saying they saw my ovaries with “certainty,” even though each time I watched them struggle to find them.

From 2010-2012, I spent the years protesting adhesions on my bowels and bladder causing painful sex, bowel movements and urination. I went back to my surgeon at least three times. My surgeon told me I was fine and there was no endometriosis. Then on the next visit he said there was fluid in the cul-de-sac and told me to take Lupron. He said, if it goes away its Endo, if not then it’s not Endo. I went back a month later with no change in the pain but he didn’t do another ultrasound to see if the fluid was still there. He just said “It’s not Endo, its Neuropathic Pain Syndrome.” Needless to say I told him off and got an appointment with the Wasser Pain Management Clinic in Toronto. The doctor wanted to try me on different meds. (I was on Visanne which made me suicidal, gave me chest, neck and back acne and severe abdominal pain and Amitriptyline which made me really groggy, crave carbs and gain weight). She wanted to switch me to Gabapentin to see if it would make a difference. None of the medications help. If anything, the meds they gave me made my symptoms worse.

By the time I made it to the pain clinic, I was doing three enemas a week just to have a bowel movement and to not be in pain. I had a another colonoscopy and as usual it showed no signs of anything. They told me my pain was IBS and Endo. I had all the signs of interstitial cysititis (IC) but the cystoscopy showed no signs of inflammation in the bladder. So again the wait continued. I was peeing in my pants because I had no sensation to pee at times, then other times the pain was so intense I would vomit and when I made it to the toilet I couldn’t pee. The pain was out of this world.  It was interfering with my life and job in a big way because I couldn’t go anywhere if I wasn’t near a toilet in seconds. I was peeing 60+ times a day at this point.

December 2012 the Gyne at the Wasser Clinic finally agreed to do the surgery. I was told she would remove my left ovary and both tubes. Since I was no longer looking to have children, if things went wrong she would open me up and remove it all.  I was OK with that. I signed off on that.

When I woke up I wasn’t in a lot of pain like my last surgery and I got very little details from my attendee. I had to wait six weeks to see my surgeon and to get my results.  I was told there was Endo in the cul-de sac, adhesions on my right side on the bowels causing a partial bowel obstruction and my right ovary was embedded in the pelvic wall and she left it there. On the other side the ovary was attached to the uterus by adhesions and the uterus stuck to the sigmoid colon by adhesions. Nothing was removed like I was told, so I was extremely confused.

At my six week appointment she said she ran into difficulties with the density of the adhesions covering the ureter and ovary that was embedded into the pelvic wall and said it was too dangerous to remove unless she opened me up…Umm did I not agree to that before I went in? rrrrr. She said my uterus was nicked with a tool and I was bleeding out but they managed to stop the bleed.

Later, after not being happy with what she told me, I took to Facebook and asked Dr. Redwine some things about my results. He mentioned that the giant cell found on my bladder flap that was biopsied was carbon residue from the laser used in 2007. He said it acts as a splinter so that might explain the painful peeing and all the other issues I had with my bladder.

Right now, after undergoing two endometriosis surgeries, I feel the major battle moving forward will always be the adhesions that seem to grow like wildfire in me. A hysterectomy would not stop the adhesions, so it is something that I still have in the back of my mind but don’t think I will pursue unless 100% necessary.

There are many therapies for adhesions, infertility and endometriosis. One of them is Clear Passage Therapy, however, I don’t live in the US and I can’t afford the treatments but I understand that they have very high success rates.

My only other option right now is Yamuna body rolling. You roll on the ball slowly to break up adhesions. I know many women who have had surgeries and swear by this technique. This is why I have considered it. I am a work in progress and I don’t know what is next. It’s a watch and wait game for now.

Is it Endometriosis?

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I probably have endometriosis, but there’s only one real way to be sure: a laparoscopy. In a few weeks, I will undergo this minor surgical procedure and finally get a diagnosis for the disease I most likely have.

The symptoms started in late November: a strong gnawing pain in my lower right abdomen that worsened over a week. I could stand up, but not walk normally. When I went to my primary care doctor, he sent me to the ER. There, they performed a CT scan and a trans-vaginal ultrasound. All they found was excess fluid. “It’s a ruptured ovarian cyst,” the ER doc said. “It’s very common in women in their mid- to late twenties. Just rest for three days, take some NSAIDs, and see your gynecologist.”

My gyno did a pelvic exam and found that I was tender and sore over my right ovary and in terrible pain when he pressed on my left ovary. Not only that, but the ligaments near the back of my uterus were tender too. He asked me a very long list of questions that I was surprised to hear. “Have your periods been getting more painful? Has intercourse become more painful? What has your menstrual health looked like over the past six months? Has anyone in your family been diagnosed with endometriosis?”

I answered that my periods had recently become irregular and more painful, but nothing too unusual. I thought that intercourse had been normal, but my partner chipped in: “No, actually, there have been times when intercourse has been very painful for you.” I had simply dismissed it as I’d read that hormonal fluctuations are normal as you near 30, and that your periods generally become heavier and sometimes more painful. My gyno told me that this is called “normalizing behavior”: because something out of the ordinary doesn’t strike us as a medical problem, we simply dismiss it and forget it even happened, much less associate it with illness. Also, members of my family did have endometriosis.

He told me I’d have to have a CT scan done to check for ovarian cysts, and that we had to rule out polycystic ovarian syndrome and pelvic inflammatory disease, but it was likely I’d developed endometriosis later than usual. He prescribed a course of progestin to reduce the swelling of the scar tissue and adhesions and then told me to start extended-cycle birth control (where you only menstruate every three months).

I was hoping to have a quick diagnosis and be back to normal in a few weeks, but it turned out to be anything but short and simple to find a diagnosis and a treatment plan.

Progestin was very hard on me physically and emotionally. I vomited constantly, even waking up in the middle of the night to do so. I grew a stringy white beard and a brown mustache (these fell out when I stopped the medication). I found myself sobbing at cat food commercials and songs I previously enjoyed. I started feeling very cold and very warm at random intervals, and thought that my partner was messing with the thermostat. These, apparently, are the joys of hot flashes. I got vertigo and found myself stumbling dizzily to the kitchen or bathroom. With each dose, I became more emotionally weird. It was a short course of hormone replacement therapy, and it did in fact reduce the pelvic pain, but I’m terrified to ever experience that kind of emotional instability again.

I started the extended-course birth control and felt better each day that progestin left my system. There were new symptoms, though, and they continued to worsen over the next three months. I felt a strange tugging sensation in the front of my pelvis when I would bend over. It’s hard to describe, but it reached a point where I couldn’t bend over to take out the trash or put on shoes. It became horrifyingly painful to use the restroom in any way. My abdomen swelled, not too much, but enough that sweatpants and pajamas were my only option for pants. I was horribly constipated, probably because going to the bathroom hurt so much that I’d stopped eating normally.

Within two weeks, I couldn’t stand or walk without assistance. Everything between my ribs and upper thighs was a mass of cramping pain. I was hoping that the birth control would reduce what was possibly endometrial tissue enough that I could walk, but one night I was in so much intense pain, now on the left side, that I begged my partner to take me to the hospital. “Something feels like it’s going to burst,” I said. I had a fever and diarrhea and a stabbing pain on the left side. The CT came back perfectly normal. The ER doc said, “There’s nothing seriously wrong with you. You probably just have a bit of stomach flu, but see a gastroenterologist just in case.”

All in all, I’ve had two CT scans without contrast, two CT scans with contrast, five rounds of blood tests, one stool sample, two trans-vaginal ultrasounds, two ER visits, six specialist visits, and a colonoscopy. The specialists ruled out polycystic ovarian syndrome, liver or gallbladder problems, diverticulitis, chronic appendicitis, cancer, and mononucleosis. Everything came back normal except for the colonoscopy, and I’m currently waiting for the diagnostic laparoscopy.

I’ve been very lucky to have specialists that took my complaints very seriously. After three months with every test returning normal, I was starting to feel like it might all be in my head. All the tests come back normal, but I’m in horrible pain! I can’t even stand up by myself anymore! There has to be something in there, why can’t they find it? What if they think I’m just seeking painkillers? They have to know that I’m not making it up! And, most of all: Why is this taking so long? I’ve been sick for three months, and I seem to be getting worse. I can’t take another day of this pain.

My gastroenterologist thought I might have diverticulitis and put me on antibiotics and a liquid diet. He scheduled a CT with contrast. The scan came back normal, but the liquid diet really did help with the bowel pain. He then wanted to rule out chronic appendicitis and put me on a very strict diet with regular use of laxatives and scheduled a colonoscopy. At that point, I had a very swollen abdomen, would cry when anyone pressed upon it, had mucus in my stool, and had strong cramps throughout my abdomen and pelvis when I was full. I was starting to lose control over my bowel movements. I still couldn’t walk or stand on my own.

They did an exam moments before the colonoscopy and told me I might need my appendix removed or a colon resection. There was a chance I would wake up in a hospital, but not to worry. They had done this procedure many times, and I was in good hands. I went under the anesthesia utterly terrified.

When I woke up, they told me they had found a large growth in my colon. They had sent a tissue sample out for a biopsy which would return in around three weeks, but not to worry. My appendix was fine. I had no infection or abscesses. Just take it easy and drink a lot of fluids.

Two weeks later, the biopsy returned. The colon growth was completely benign, and they had cauterized its blood supply during the colonoscopy. It would wither and pass all on its own. My gastroenterologist said it might grow back, but not to worry. He’s fairly convinced, although we have to wait for the laparoscopy, that the growth is the result of endometrial implants and scar tissue putting pressure on my colon. He’s fairly sure that the laparoscopy will show that I have advanced endometriosis, and the implants and scar tissue have spread very far up my abdominal cavity, causing irritable bowel disease and the colon growth. He told me to follow a special diet, take laxatives as prescribed, drink plenty of fluids and above all, to calm down. Breathe. Relax. Know that I have good doctors and I will be OK.

I’ve discovered a few things along this bumpy diagnostic road. I’m allergic to all painkillers, so other pain solutions and stress management are vital. Warm baths, walking even though it hurts, and eating a vegan diet with lots of water and laxatives as prescribed are very important. I’ve been encouraged by my doctor to apply for medical marijuana use, but that’s a whole other story.

Stress reduction is the most important factor in my life right now. The pain and uncertainty of being diagnosed with this disease are very hard to experience, and also hard on  family, friends, and romantic partners. Find music you think is soothing. Make sure you have some time in a park or near plant or animal life. Try meditation or yogic breathing if that’s something you’d like to do. Surround yourself with books and TV that make you laugh. If anyone treats you badly, blames you for the disease or pulls away, that’s their choice, and it doesn’t mean it’s your fault. Some people react poorly when confronted with illness, and that’s their problem, not yours.

It is so important to research your doctors and specialists before you make appointments. Make sure they have no citations for malpractice and that they’re certified to do the surgical procedures you need. If your primary care doctor or specialist minimizes or dismisses your symptoms, or simply tells you they don’t know what to do with you, find another doctor immediately. Keep a journal of your symptoms. They might change on a dime! There are many applications out there besides pen and paper to track your reproductive health and endometriosis symptoms.

I have lost nearly 30 pounds, but I can walk again now that the colon growth is gone. Sometimes I can drive, which is fantastic after four months of being stuck in bed. As long as I follow the vegan diet my gastroenterologist put me on and take laxatives as prescribed, my digestive health is more or less back to normal. The extended-cycle birth control has made my life a lot easier as well.

There are days when I can go grocery shopping, drive myself around, eat three good meals, and go for long walks. There are other days when I need to stop what I’m doing and rest because of pelvic pain. There have been a few days when I’ve vomited frequently and couldn’t sit or stand at all due to pain, and it’s back to bed for me.

I have so many questions now, but it’s a great relief to see the end in sight. After the laparoscopy, we will know for certain if I do have endometriosis. It runs in my family, and it seems the most likely culprit. My greatest fear is that they will find nothing, but I hope that won’t be the case.

Thoughts that keep me awake at night: What if the intense pain comes back? What if I become bedridden again? What happens when I’m 35 and have to stop the birth control? What will my sex life be like? Will my partner still find me desirable and worth the effort if I’m sick on and off until menopause? What if the bowel disease and growths come back? How will I find an employer that is understanding of this condition, of how I may have to take 2 or 3 days off every month if I’m in too much pain to stand or drive?

Those questions don’t really matter in the long run. Being anxious and scared is normal after all these changes to my body and life. Researching this disease and finding treatment options and coping mechanisms is of great importance. Building a support network of friends and people who know what I’m going through also matters. Finding doctors I trust and can work with matters. I don’t expect anyone else with this disease to say, “That’s exactly what happened to me!” Endometriosis affects every woman differently. Symptoms can differ wildly from person to person. Accepting my body, no matter how much pain it’s put me through, is also important. I’m still worthy of love and friendship, and my goals are still possible, I just have to shift my perspective a bit.