Liamarie_

Hi there,

I found this to be the case with me it took 7 long painful years I felt that I wasn't believed the pain was in my head I felt that I was just a big baby and couldn't handle women's pains. but if you feel that something is wrong do not give up. keep going back until this is investigated.

I'll never forget what my recent gynaecologist said to me "I think you've earned your ticket to surgery now" speaks for itself, it's a battle but never give up until you have an explanation.

Good luck x

Letishareidxo

Have the same experience, thought I had endo but after lapasopoy they found adhesions on pouch of duglous got no diagnosis and they still try and do anything but to help. I've now apparently got ibs and painful periods... but I can't have sex or most thinks sexual but it hurts. No mater how long I leave it I get a horrible dry pain and pain from my bum through my hips but we've gotta keep trying and follow our gut. X

katie1006 in reply to Letishareidxo

This being a woman is fair rubbish ey! Best of luck to you

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Allyson1 in reply to Letishareidxo

I describe it as a "dry" pain too sometimes. I had endo and adhesions on my uterus and bowel, not sure how bad, and not sure how much the doctor did in surgery because he didn't record it!

After surgery the pain and ibs got much, much worse.

But I found that strict diet change eventually eased a good deal of the intestinal and endo pain. It's still there, but much lessened. I actually suspect it rivals any relief that drugs might have given me.

Oh, and dyspareunia is much improved, actually for the first time in my life.

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katie1006 in reply to Allyson1

With the strict diet change, what foods do you eat and which do you avoid?

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Allyson1 in reply to katie1006

Sorry so late. No soy, dairy, or wheat. Not even cross-contact in food prep. Also no sugar and moderately lower garb in general- I swear if I eat sugar my endo lesions will burn. My doctor suspects celiac so the diet is strict.

I think a paleo-ish diet is a good direction. Leafy greens and vegetables are like medicine.

I see an endocrinologist who monitors nutrient deficiencies and treating those has helped a lot- keeping my iodine levels up has been a HUGE help with endo pain. Improved vitamin k levels means lighter bleeding, magnesium and iron helps with premenstrual nausea and hunger cravings. Moderating blood sugar helps with hormones and inflammation in general.

It's hard to do this stuff on your own. I particularly wouldn't urge anyone to just take supplements by guessing, particularly iodine, since it can hurt the thyroid.

Honestly, I think endocrinologists can help a lot with improving general health in ways that can lessen endo pain.

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Letishareidxo in reply to Allyson1

Right okay I've been trying to cut out fibre and sugar ect but I just bloat with everything have problems with bowels and I wee like every half a hour...

Yeah it's horrible I get a bruising pain around my bum and hips it's burns ect with anything sexual. I know my surgeon was awful didn't inform me or take a biopsy of check for deep endo. Amazing! I am seeing some massive relief in comparrision to my period pains in my uterus because before it was a 10/10 now it's just about bearable.. but getting new pains in hips, bum and my boobs and ribs are so inflamed feels like my muscles eugh

X

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Allyson1 in reply to Letishareidxo

I used to pee every half hour, no lie, including at night. I was always thirsty and hungry. I began getting tired after meals and had dry eyes and skin.

Most doctors just wrote it off as fatigue, but it turned out to be prediabetes. I kind of wonder if women with endo are more suceptible to metabolic problems.

I take medicine and my bladder feels closer to normal.

I had bloating for years. After my laparoscopy it turned into constant burning pain (it felt tube-shaped, if that makes sense, like it was intestinal), diarrhea mixed with constipation, constant hunger, nausea. It felt like I had eaten steel wool.

I saw multiple gastroenterologists who just called it IBS and weren't concerned. My doctor now diagnosed celiac based on my presentation and we treated it accordingly. It made a huge improvement, and that's actually when my deep pain with intercourse improved.

I had a kind of bruising pain along my bum too, it felt like getting struck with a little mallet, if that makes sense. I think it was vaginismus or something muscular. As my abdominal pain has improved, that's just resolved a lot on its own. When I was in constant pain, I just got really wound up.

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katie1006

Thank you so much, I've clicked to join the group. Incidentally, I have a doctors appointment tomorrow to get more painkillers. See how I feel tomorrow whether I am up for the fight, I was recently diagnosed with depression as well which I have read could be a side effect of the pain killers

Starry

Dyspareunia is one of my biggest symptoms and led to a failed attempt at a diagnosis via general gynae 15 odd years ago. I've always just lived with the pain but finally after discovering here and BSGE endo specialist centres I am investigating the option of surgical removal of a deep RV nodule - the prime suspect for this one of my symptoms. Do see about getting a referral once ready to fight again x

katie1006

I have yes

kitteh_cat

Hi there. I was only diagnosed a few weeks ago having actually gone to see a consultant about abother problem. I never had any problems witb painful periods or any signs of endo but I had been suffering with an unconnected condition and was at my wits end I had decided the best course of action was to write down literally every little symptom and tell my new consultant no matter how embarrassing. One of my symptoms was when I became aroused I would get this weird tight hot pain up along the inside of my thighs and along my bum. I'd also feel like I'd been kicked in both butt cheeks ... like they were bruised or something. Seemed insignificant to me but when I told him it happened both during sex and when I masterbate it was like a light went on and he just said ... I think you have endometriosis and I think it's affecting these particular nerves. He was right of course. I don't know what your situation is but I suffered for 15 years. Saw countless consultants etc until I finally asked to see a private consultant. It cost me €200 but within 10 minutes he was able to diagnose me. Best €200 I ever spent !

I really hope you get some answers soon.

Letishareidxo in reply to kitteh_cat

I get the exact same pain every time but they said I don't have endometriosis and I've always thought I had. Ive only been diagnosed with adhesions which were cut 4 months ago and I still have the same symptoms if not worse. Hope we all get the answers we deserve xx

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LoriLeal1

Hi,

I see that this is an older post, but I found it upon doing a Google search relating to pain associated with endometriosis. I've been dealing with this for many years, yet it never ceases to amaze me with how severe the pain can be at times. Tonight I've found myself irritable with everything and everyone, because my mind won't allow me to think beyond much else. However, I wanted to post a reply to this for a couple of reasons. One is to let anyone who may be reading this know that endometriosis pain is very real, and never be afraid to tell your doctor the truth about your pain levels. Another reason is to say that I've found something that seems to help significantly with the buttocks pain (for me it feels like a very intense muscle cramping /pulling pain throughout my buttocks - especially on each side towards my hips, and my lower back as well). I've found that Salonpas patches really help to ease the pain, which ultimately helps me relax. I bought a box of the smaller patches for around $10 (for a box of 60). I used to take pain killers, but have since had to seek a more natural route, due to the fact that I've moved to a new state and no longer have insurance. But the patches are truly helpful, and I hope this might help someone reading this. I've also found that Epsom salt baths on a regular basis can help, as well as regular exercise (which admittedly can be difficult when you're already in pain and low-energy, but if you can tough it out, it seems to help in the long run). Please don't be too hard on yourself either, and allow yourself to rest when you can. Hugs and healing thoughts, xo