Question for the women re: pain

[ahimsa]

I used to have very bad pain from endometriosis. It eventually escalated to pain throughout the whole month, not just during my period. So my pain was maybe level 5-6 during the non-period days and then at 9-10 (or screaming) on the days of my period.

What finally stopped the pain for me was surgery by an endometriosis specialist. My surgery was not a hysterectomy but just excision (cutting, not lasering or burning) of the abnormal endometrial tissue (in other words, the tissue not inside the uterus).

That surgery was in 2000. I've been mostly free of menstrual pain (ibuprofen now and then) since the surgery.

But in the meantime, @Gingergrrl , I can share a couple of things that helped me with pain before my surgery.

I should note that my suggestions are based on the assumption that the pain is from endometriosis. But if your pain is from something else then these ideas are unlikely to work. Also, these were ideas that worked (temporarily -- eventually nothing helped much). I'm not listing all the many ideas, such as herbs, homeopathy, acupuncture, that did not work for me. But other folks may have had better luck with them.

You've already mentioned painkillers but I don't know which ones you're on or how well they are working. If the pain is from endometriosis then prostaglandins are one of the sources of pain. NonSteroidal Anti-Inflammatory Drugs (NSAIDs) seem to work best against this type of pain. In addition to over the counter (OTC) NSAID drugs like ibuprofen (which I took at double the normal OTC dosage, approved by my doctor) I also took a stronger, prescription NSAID called ketorolac (brand name Toradol). Here's a list of various NSAIDs -- http://www.rxlist.com/nsaids_nonsteroidal_antiinflammatory_drugs-page3/drugs-condition.htm -- just in case it helps.

One side benefit from these kind of drugs, at least for some folks, is that it may help with low blood pressure or dropping blood pressure (NMH/POTS). Apparently NSAIDs limit the vasodilating effects of circulating prostaglandins.

And someone else already mentioned birth control pills. I know now (hindsight) that coming off birth control pills (I had a tubal ligation so no more need for pills) was one factor that contributed to my increase in pain.

Okay, on to non-drug options.

* Evening Primrose Oil (EPO, Efamol brand)

There's a long list of possible essential fatty acids (borage oil, fish oil, etc.) that might help. Evening primrose oil is what worked for me. Actually, I still take it in the hopes that it helps reduce inflammation. I don't really see a huge difference in any other symptoms but back when I was having the endometriosis pain I think it made my pain less. And I kept taking it in the hopes that post surgery I would not have more endometrial implants (I'm omitting a long story on theories behind what causes endometriosis).

* Diet changes, especially removing dairy foods (milk, cheese, ice cream)

I was very resistant to this idea at first. I could not believe it would make any difference. But it seems that there are certain foods, and dairy is one of them, which increase arachidonic acids, which then contribute to the prostaglandins, and these increase inflammation and pain. I don't claim to understand the whole chain of events but here are some links:

http://www.endo-resolved.com/prostaglandins.html
http://www.endo-resolved.com/prostaglandins_endometriosis.html
http://www.endo-resolved.com/diet.html

There are other places to read about prostaglandins this is just the first/easiest one that I found.

That website above has a very long list of diet suggestions (and I just noticed that they are selling a book, which I did not buy). I did NOT follow all the listed recommendations, and I was already a vegetarian, so one of the biggest changes for me was removing dairy. And it did help a lot. For someone else another food might be a bigger trigger for their pain.

When I cut out dairy there was no immediate affect (e.g., no more or less pain that very day). But when my period came the pain was less. And when I forgot, and ate more dairy that month (e.g., had visitors and bought ice cream), then when my period cam the pain was worse.

I hope you find some more pain relief!

Sending HUGS

 

[ahimsa]

One thing that used to help when I was physically able to do so was getting in a warm bath, that helped with cramps although hot water makes my heart pound and makes me feel weak and dizzy. You can't win sometimes can you?

Oh, I can totally relate! I have NMH so heat triggers problems. It's tough when one part of your body wants heat and the rest of your body wants it to be cool.

I was often found lying in the recliner wearing a tank top (to keep my upper half cool) but at the same time wrapped in a blanket with heating pad across my lower abdomen. Oh, and also with bare feet. Very important.

 

[Debbie23]

Oh, I can totally relate! I have NMH so heat triggers problems. It's tough when one part of your body wants heat and the rest of your body wants it to be cool.

I was often found lying in the recliner wearing a tank top (to keep my upper half cool) but at the same time wrapped in a blanket with heating pad across my lower abdomen. Oh, and also with bare feet. Very important.

Yep! I'm the opposite in terms of feet though, my feet tend to be cold and my hands too. Yesterday my hands and feet were freezing, my legs had a load of cool patches all over them and warm patches, too but the rest of my top half was fine. I was sat with gloves on my hands, my top half with only a tshirt on, but a heatpad across middle and blanket and thick slipper booties on my feet! Trying to get the balance right is a nightmare sometimes!

 

[Gingergrrl]

Thank you so much to everyone for the additional feedback and ideas. I've been in horrible pain again today although thankfully not as bad as yesterday (plus a little vertigo and tachycardia... good times .) I plan to read through and respond to a lot of the ideas in this thread tomorrow or later in the week when I am feeling a little better. Thanks again.

I was a little surprised how much the rest of you also suffer (or suffered) from severe cramps and is there a known connection or correlation with ME/CFS?

 

[WillowJ]

I was a little surprised how much the rest of you also suffer (or suffered) from severe cramps and is there a known connection or correlation with ME/CFS?

It's hard to say, because I think the research done on ME/CFS and female problems is a Reeves study. This was done in Wichita which supposedly uses Fukuda 1994 criteria (as opposed to Georgia which uses the Reeves 2007/Empirical criteria, which is definitely unreliable).
As pregnancy was greater than healthy controls, I think this cohort is possibly not representative.

Say, look at that, it cites a paper I didn't know about, a Komaroff study. http://www.ncbi.nlm.nih.gov/pubmed/9790489/

feel better, Gingergrrl

 

[WillowJ]

Mine is out of sync too. My progesterone is low and estrogen normal. Even with estrogen normal it makes the ratio between the hormones out of balance and therefore, estrogen dominant.

In endometriosis doctors say the estrogen feeds (for want of a better word) the tissue that is endometriosis and causes it to grow/spread. So a progesterone only pill (POP) or the mirena coil which secretes a low dose of synthetic progesterone are treatment options

That's interesting. I have some opposite symptoms to endo, but can be very irregular. It was the irregularity I wanted to treat.
My doc tested both at once, just needed to know what day. Said it was best if it was around day 0.

I wouldn't think testing could be useful if it the doctor didn't ask what day.

I used a non-synthetic plant-based progesterone, which comes as a cream, troche, or can be compounded in drops (not expensive, actually, plus my insurance paid).

Mirena coil sounds interesting because then I couldn't forget.

 

[CantThink]

That's interesting. I have some opposite symptoms to endo, but can be very irregular. It was the irregularity I wanted to treat.
My doc tested both at once, just needed to know what day. Said it was best if it was around day 0.

I wouldn't think testing could be valid if it wasn't recorded what day.

I used a non-synthetic plant-based progesterone, which comes as a cream, troche, or can be compounded in drops (not expensive, actually, plus my insurance paid).

Mirena coil sounds interesting because then I couldn't forget.

I'm very irregular and seem to love to bleed these days! I used to be the other way and have very long cycles with no inter-period bleeding until I developed a thyroid problem.

I have used NPC before. My mum has success with it, but I think for me it might not have been strong enough or else I needed the endo excised first (which is when I had the mirena inserted in her GA). Perhaps the latter is more likely, but I agree that it's annoying to have to remember to apply it and easy to forget.

My body is still adjusting to the mirena and I know it either eventually works or obviously doesn't and needs removal. I'll give it a year and reevaluate. I picked it over other options as it is supposedly a good fit for preventing endo rapidly spreading (although sometimes that does still seem to happen) and it lasts a long time so in theory less stress and hassle for me.

 

[Sidereal]

Reading this thread makes me hate prostaglandins even more.

 

[ahimsa]

I happened to see this study today:

Early menopause and other gynecologic risk indicators for chronic fatigue syndrome in women
http://www.ncbi.nlm.nih.gov/pubmed/25647777

From the abstract (my bolding):

Women with CFS reported significantly more gynecologic conditions and surgical operations than controls: menopause status (61.9% vs 37.0%; OR, 2.37; 95% CI, 1.21-4.66), earlier mean age at menopause onset (37.6 vs 48.6 y; adjusted OR, 1.22; 95% CI, 1.09-1.36), excessive menstrual bleeding (73.8% vs 42.5%; adjusted OR, 3.33; 95% CI, 1.66-6.70), bleeding between periods (48.8% vs 23.3%; adjusted OR, 3.31; 95% CI, 1.60-6.86), endometriosis (29.8% vs 12.3%; adjusted OR, 3.67; 95% CI, 1.53-8.84), use of noncontraceptive hormonal preparations (57.1% vs 26.0%; adjusted OR, 2.95; 95% CI, 1.36-6.38), nonmenstrual pelvic pain (26.2% vs 2.7%; adjusted OR, 11.98; 95% CI, 2.57-55.81), and gynecologic surgical operation (65.5% vs 31.5%; adjusted OR, 3.33; 95% CI, 1.66-6.67), especially hysterectomy (54.8% vs 19.2%; adjusted OR, 3.23; 95% CI, 1.46-7.17).

Note that I don't think there is anything here about causation, just correlation. For example, if there could be some underlying autoimmune problem contributing to these menstrual problems and also ME/CFS symptoms.

 

[Gingergrrl]

Reading this thread makes me hate prostaglandins even more.

ETA: I forgot to put the link to Mayo Clinic and am including it below:

http://www.mayoclinic.org/diseases-conditions/menstrual-cramps/basics/causes/con-20025447

During your menstrual period, your uterus contracts to help expel its lining. Hormone-like substances (prostaglandins) involved in pain and inflammation trigger the uterine muscle contractions. Higher levels of prostaglandins are associated with more-severe menstrual cramps.

Severe contractions may constrict the blood vessels feeding the uterus. The resulting pain can be compared to the chest pain that occurs when blocked blood vessels starve portions of the heart of food and oxygen.

@Sidereal I copied the above from the Mayo Clinic website talking about prostaglandins and menstrual pain/cramps.

I thought the comparison was interesting b/c I have experienced several micro vascular angina spasms (at least that is what we think they are) yet the pain from those spasms is a tiny fraction of the pain of menstrual cramps which is without question the most severe pain I have ever experienced in my life.

I still plan to reply to a lot of other posts in this thread when I have a chance.

 

[ahimsa]

... the pain from those spasms is a tiny fraction of the pain of menstrual cramps which is without question the most severe pain I have ever experienced in my life.

When I was a teenager my mother mentioned her own problems with endometriosis pain that she had before having children. She said the endometriosis pain was worse than labor or childbirth. And she had three children.

I've never had children, so I don't have any experience with labor, but I don't think she was exaggerating.

PS. Thinking of you, Gingergrrl, and hoping you're feeling a bit better.

 

[Gingergrrl]

When I was a teenager my mother mentioned her own problems with endometriosis pain that she had before having children. She said the endometriosis pain was worse than labor or childbirth. And she had three children.

I've never had children, so I don't have any experience with labor, but I don't think she was exaggerating.

PS. Thinking of you, Gingergrrl, and hoping you're feeling a bit better.

@ahimsa Thank you and cramps are gone (until next month ) and now just dealing with the regular nonsense of ME/CFS symptoms. I have never been diagnosed with endometriosis and had a surgery to remove uterine polyps in 2012 and it seems like they would have told me if they'd found endometriosis? This is the surgery that I became so ill from and less than a week later was diagnosed with mono. I regret it to this day but cannot go back in time.

Wow, I had not heard that the pain was worse than labor or child birth but there are times when it feels like contractions and I imagine that it is similar to being in labor (or the early stages of labor) but I do not know from personal experience and have no biological children.

 

[ahimsa]

I have never been diagnosed with endometriosis and had a surgery to remove uterine polyps in 2012 and it seems like they would have told me if they'd found endometriosis?

I don't know. I guess it partly depends on the surgeon's experience and also whether they were looking for it. I think it's possible that if they were not actively looking for abnormal endometrial tissue in the peritoneum (abdominal cavity), and they just went inside the uterus to remove the polyps, then maybe they missed it. In my case, for example, the surgical report said that most of my abnormal tissue was concentrated in one area, around my right ovary and tube.

Wow, I had not heard that the pain was worse than labor or child birth but there are times when it feels like contractions and I imagine that it is similar to being in labor (or the early stages of labor) but I do not know from personal experience and have no biological children.

What's strange is that there are women with extensive endometriosis but no pain. These women often only find out about endometriosis when they start having fertility problems. So there's a real range of how painful it is.

I don't know whether doctors ever figured out why some cases of endometriosis cause so much pain while other women have extensive abnormal tissue, and possibly fertility problems, but not much pain. At the time of my surgery (2000) I don't think this was known.

 

[Debbie23]

@ahimsa Thank you and cramps are gone (until next month ) and now just dealing with the regular nonsense of ME/CFS symptoms. I have never been diagnosed with endometriosis and had a surgery to remove uterine polyps in 2012 and it seems like they would have told me if they'd found endometriosis? This is the surgery that I became so ill from and less than a week later was diagnosed with mono. I regret it to this day but cannot go back in time.

Wow, I had not heard that the pain was worse than labor or child birth but there are times when it feels like contractions and I imagine that it is similar to being in labor (or the early stages of labor) but I do not know from personal experience and have no biological children.

Just speculating here, ginger but I wonder if your general anaesthetic (Stupid question alert but I presume you had it done under GA?) upset you as it did me? Although looking back I was poorly with ME before it was definitely the GA that made my body go 'wooooah! Okay now that's enough!'. Since then I've had two GA and both times its led to serious relapse. The first GA I had i completely collapsed almost exactly a month after it, after a sharp decline, I woke up one morning follwing struggling to walk out to the garden bench the day before and not knowing how I was going to get back, and suddenly the next morning couldn't even stand, could barely talk was struggling to be conscious etc. And reading my mums diaries (with her permission I must stress!) at the time it was definitely ME and not 'just' a bad GA reaction. I do wonder if it acted as a trigger for you too. Just a thought, I could be wrong and I hope you don't mind me wondering. My body REALLY doesn't like GA, even when I've been under only a short time it screws up things like my vision, cognition and all other symptoms for a long, long time after. From what I've heard this is very, very common in ME patients and I was surprised actually but the surgeon this time. actually raised this as a concern before he agreed to do my surgery!

I'm with you in that I kind of regret having that one done, it was a wisdom tooth extraction but I was suffering with it and it wasn't making my life better because it was causing all sorts of problem due to a communication with my sinus. But my mum always says you make the best decision for you at the time, you can't know what's round the corner that will make you come to view it as a 'bad choice' in hindsight. I'm paraphrasing but you get the gist. The mistake of my life was going to high school, rather than continuing home schooling, I was already poorly at that stage but nowhere near as bad and it was there that my boom and bust cycle really got to grips with repeated infections and together made me really ill. But I didn't know it at the time and I can't beat myself up because I couldn't have known what would come of it. Just like you couldn't have known what came from your surgery. What I mean is I don't think you can beat yourself up about the choices you made in the past with regard to how the affect your ME now, I have myself, I still do but as you say you can't go back and you didn't have the experience or the information you have now so your perspective on things and the choices you might have made were totally different as a result, they were the best choices you could have made at the time. As they say only hindsight is 20/20, If that sounds glib, it's not meant too! What I mean is that I suspect most of us look back at certain key things and think 'if only I hadn't done....', but at the time whatever it was was probably thought about and was the best choice at the time.

Ahimsa is right in saying that just because they didn't see it it doesn't mean it's not there and that the amount of Endo doesn't always relate to the symptoms a woman experiences. From what I've read, women can have microscopic Endo and be in agony and others can have very invasive Endo and barely feel it, I don't think they know why at this stage. For instance my Endo was officially classified as 'mild' because of the depth of the adhesions and location I think, again if I'm remembering correctly, but it was still visible and still bad enough to stick my bowels to other bits in my abdomen. And the symptoms it caused were bad enough that It used to make me vomit, pass out and crumple in a heap on the floor, or curled up in a ball in bed, and be unable to sit up right or straighten out it was like my body was kind of 'locked' in that position it hurt so much. It's been better since my last surgery for Endo, although my MEs been worse due to the GA, but I think it's going that way again. I woke up a few weeks ago after being solidly asleep in a nice dream because it felt like someone had just rammed a knife into my abdomen and was twisting it. Was the arrival of my period ten whole days after the last one. Lovely.

But I think because its microscopic to begin with its unlikely they can get it all even if they are looking and that's why it comes back over time even if they cut and burn all the adhesions they can see, there are likely to be others that will grow or whatever process that causes them is likely to continue. From what I've read no one really knows why women get endometriosis but I think it's agreed that it's something to Do with the immune system, which to my unscientific logic suggests that's probably why it's apparently so common in women with ME. My Endo was biopsied and photographed in my abdomen before it was removed so they can see in future if I need another op, seems likely, if the same ones have grown back or are different. Would be interesting to know. If only I could see without having to need an operation! Maybe one day.

I've not had been through labour either, but I know how vile this pain can be. I sympathise with any women going through it. It's hideous and I'm really glad you are feeling a bit better. And hopefully you get what I'm trying to say and it's not too clumsily worded!

 

[Mya Symons]

@ahimsa Thank you and cramps are gone (until next month ) and now just dealing with the regular nonsense of ME/CFS symptoms. I have never been diagnosed with endometriosis and had a surgery to remove uterine polyps in 2012 and it seems like they would have told me if they'd found endometriosis? This is the surgery that I became so ill from and less than a week later was diagnosed with mono. I regret it to this day but cannot go back in time.

Wow, I had not heard that the pain was worse than labor or child birth but there are times when it feels like contractions and I imagine that it is similar to being in labor (or the early stages of labor) but I do not know from personal experience and have no biological children.

I had a tubal ligation and they didn't see it. I also went in for an ultrasound before my hysterectomy and they still could not see the endometriosis. I had a hysterectomy because of very heavy bleeding during my period. I was anemic because of the bleeding. When they opened me up, apparently there was all kinds of lesions and scar tissue. My surgery took an extra 2.5 hours and they had to call another doctor in. It was so bad that my ovary is permanently attached to my sigmoid colon and I have scar tissue inside my sigmoid colon. For awhile they were talking about taking part of my sigmoid colon out. I'm glad they did not do this. However, I still have some problems going to the bathroom. (They kept the real reason they were thinking about removing my sigmoid colon from me. The only doctors who would tell me the truth was the emergency room doctor and the second gastroenterologist I saw not associated with the other doctors. I was in the hospital for a month after the hysterectomy because they did not notice the endometriosis before my surgery.)

Anyway, the point is that apparently they have to go in with a scope and look at the right areas outside of the uterus to see endometriosis. If you have pain in your legs or your back when you have your period or if the pain is similar to labor, make sure they go in with a scope and look around. It could still be there, especially if you have ME/CFIDS or FMS.

 

[Gingergrrl]

I wish I was feeling well enough to reply to this thread in detail and ask some questions but I was pretty sick today. I am really wondering now if I have undiagnosed endometriosis on top of everything else? (That is not why I was sick today but just thinking about it from all the detailed stories you all shared.). Thank you all so much and I hope to properly read and reply to this thread soon!

 

[taniaaust1]

Wow, I had not heard that the pain was worse than labor or child birth but there are times when it feels like contractions and I imagine that it is similar to being in labor (or the early stages of labor) but I do not know from personal experience and have no biological children.

For me having had two children, I can say my period pain can be worst then either of my two childrens births were. I never almost past out having them and I actually found one of their births and labour quite enjoyable.

..........

For instance my Endo was officially classified as 'mild' because of the depth of the adhesions and location I think, again if I'm remembering correctly, but it was still visible and still bad enough to stick my bowels to other bits in my abdomen. And the symptoms it caused were bad enough that It used to make me vomit, pass out and crumple in a heap on the floor, or curled up in a ball in bed, and be unable to sit up right or straighten out it was like my body was kind of 'locked' in that position it hurt so much.

I used to often wonder if I could have endo. No doctor ever sent me to a specialist for the intense period pain. I often used to get just like described here.. curled up in agony but rocking too as it was too painful to be able to stay still. I'd end up falling asleep in ME severe exhaustion, still curled up like that and not being able to walk with the period pain.

 

[CantThink]

The gold standard for diagnosing endometriosis is a laparoscopy.

A hysteroscopy, for example, won't diagnose it as the camera/telescope thing needs to look in the abdominal cavity - from diaphragm to pelvic floor - rather than inside the uterus.

Sometimes the use of an MRI or ultrasound can assist with diagnosis, depending upon what organs are involved. For example, if an endometrioma (endometriosis chocolate cyst) is found, or if the bowel, bladder or pouch of douglas are involved. However, both myself and many other women who have had multiple scans end up getting diagnosed during the laparoscopy... because the endometriosis is missed or not visible on the scans.

On a side note about misdiagnosis, when I had the last ultrasound before surgery, the sonographer pronounced the scan clear except for suspecting a polyp inside my uterus... Yet when I went under the knife, they found a fibroid growing out of my uterine wall, in addition to the endometriosis. This goes to show how with scans we really are at the mercy of the person/s interpreting the images.

 

[Debbie23]

I used to often wonder if I could have endo. No doctor ever sent me to a specialist for the intense period pain. I often used to get just like described here.. curled up in agony but rocking too as it was too painful to be able to stay still. I'd end up falling asleep in ME severe exhaustion, still curled up like that and not being able to walk with the period pain.

It's vile isn't it? It definitely sounds familiar and I do think Endo is very common in women with ME from what I've read. Again I wonder if it's related to the immune system?

I get dreadful pain in my hips too at time on the month, it radiates down my thighs and in my back but my hips are just awful at times; that was when sitting in a warm bath used to help take the edge off it, but I couldn't physically get in a bath now even if I could tolerate the heat of the water. Last time I tried to get in a bath I didn't think I was going to be able to get out, even with my mum helping! But it did used to help. It didn't take the pain away but it took the edge off, so if you could mange the heat and physical practicalities of a bath it may help.

I was told when I had ultrasounds that they can rarely show Endo, no matter the depth or intensity of it. I've never had an MRI for it specifically but I have had two laps. The laps have helped with my Endo but made my ME seriously worse overall, that's not to say it would do that for everyone, but it's a consideration I will definitely bare in mind before I go back. But then if your Endo is aggravating your ME each month it's hard to know what to do!

Again I think it was the GA and from what I've seen online there are things that can be done to potentially reduce the impact of that on ME which I wish I'd known last time for my dental work because I think the surgeon would have listened! He was a bit scary, lol, but he clearly, clearly took ME very seriously, so I would have braved raising it with him because I think he'd have considered it except I didn't know about it being common to struggle with anaesthetic with ME at the time. I was also in recovery for ages apparently so they were clearly watching me closely. So if you guys ever do go for a lap I would print off some of that information that's around relating to GA and ME and take it with you. I had a surgeon who I strongly suspect would have listened and been open to it, so it's worth asking at least. I obviously don't know if it would help me or anyone else. But if I go for another I will raise it because I'd rather risk them saying 'no' than having another relapse.

 

[Gingergrrl]

Some day I plan to re-read this thread and respond to all the great feedback that I received and ask some questions. But in the meantime, I wanted to post a link to a study sent to me by @Sidereal (with her permission of course!) which found many gynecologic abnormalities in women with CFS.

http://www.ncbi.nlm.nih.gov/pubmed/25647777

From the study:

Menstrual abnormalities, endometriosis, pelvic pain, hysterectomy, and early/surgical menopause are all associated with CFS. Clinicians should be aware of the association between common gynecologic problems and CFS in women. Further work is warranted to determine whether these conditions contribute to the development and/or perpetuation of CFS in some women.