Constant pain - anyone else have similar symptoms please?

[SasK87]

Hi - I've come here in desperation really and hoping someone can help. Since the birth of my Daughter 18 months ago via c-section, I'm in constant pain most days, with stabbing achy pain on the left side of my pelvis (feels like from my ovary) which radiates all through my lower back. Some days this pain is manageable but days like day, which are becoming more and more frequent, the pain consumes my every waking thought.

I've been to see a gynecologist who couldn't find anything on an internal ultrasound. I've been suffering bad bloating the last month or so and had to have an emergency colonoscopy which was all clear. I'm due to see my gynecologist again next week to discuss a laparoscopy.

I guess my questions are:

Can pain from endometriosis be constant without a pattern? The only pattern I am finding with the pain is that it subsides slightly once I've had a poo (sorry tmi)

Has anyone experienced leg back with endometriosis? Some days the pain radiates down my left leg too.

Does anyone experience fatigue with endometriosis too?

Is there anything I can do to manage pain like this? I have a young daughter and it's breaking my heart that I can't be present with her fully.

Thank you xx

[plotments]

A laparoscopy would be the best way forward for a diagnosis especially if things are affecting you on a daily basis.

I have endo on my bowel as well as other areas and can relate to your symptoms

fatigue is a common symptom with endo as your body is constantly fighting inflammation.

Pain relief is hit and miss as to what works best for you, peppermint capsules can help with some of the bowel probs

Has Dr mentioned it could be scar tissue from c-section?

take care xx

[SasK87 in reply to plotments]

Thank you so much for your reply. He did mention it could be scar tissue yes.

Funny you should mention inflammation too as my CRP marker is always raised since having my Daughter and they can't figure out why. I think I'll mention that to him on my visit next week.

I'm going to get some peppermint capsules tomorrow - thank you

Have you had a laparoscopy?

[plotments in reply to SasK87]

I've had 2 laps currently waiting for hysterectomy and removal of endo on bowel and diaphragm

hope peppermint calms things down a bit for you

[SasK87 in reply to plotments]

Ahh good luck with your surgery x

[plotments in reply to SasK87]

thanks

[Prettythings1]

Hi I totally feel your pain I have similar symptoms I’m on a waiting list to see a gynaecologist it’s a long wait I noticed that my pain got worse after my second child who is nearly 18 months also!

I also had a C section scare tissue maybe. But my pain is mainly on my right ovary it’s a sharp pain I definitely think there’s a cyst there or something I just wish my referral to hurry up I’m currently trying the Endo diet. Cutting out gluten and dairy etc. To see if it helps I am on 3 long weeks xx

[SasK87 in reply to Prettythings1]

Ahh that sucks you have to wait. Is the wait always that long for NHS?

Did you have any pains before your baby? I've got PCOS but never ever experienced pelvic pain like this.

I'll have a look at the endo diet too - than you x

[TennisAM]

Hi I'm so sorry to hear that. Is your gynaecologist at a BSGE endometriosis centre? If not its important to see a endometriosis specialist.

Did your consultant tell you that scans are unreliable, the only proper way to diagnosis endo issues are via symptoms and gold standard is laproscopy.

I've had daily pain without a pattern and also exhaustion thanks to endo. The random pain I had was due to scar tissue and having a fused ovary.

Does the leg pain feel like sciatica?

Its worth trying a few things while you wait for a lap. The things below have helped me.

Can I suggest some herbal stuff:

If you can afford it I would seek out a good traditional Chinese specialist. If they have the understanding they can be outstanding at helping with endo symptoms. Chinese medicine such as acupuncture and herbs balance the body and treat the cause of the issues. If you are in London there's a good one I can recommend

These plasters were recommended by my Chinese medicine specialist. To be used daily on the affected areas. My pain regularly goes away within an hour or 2 and will last for more than 12 hours. If used for 12hrs daily sometimes it doesn't return. Plaster to be used for no more than 12 hours. Can replace with a new one if you want to use for 24hrs. These plasters are a must, they've really helped me either reduce or eliminate endo pain.

amazon.co.uk/dp/B07H4NQD3L/...

Pycnogenol (extract from pine bark) is clinically proven to help with endo period pain. It reduces it by at least 30 percent in all patients. Study used 60mg a day. Takes 1 month of daily use to start having an effect. I use 80mg a day and 120mg week before my period and during my period. Reduced pain from 8/10 to 2 or 3 out of 10. I couldn't find any side effects through research and don't experience any myself. Its a powerful anti inflammatory.

Serrapeptase is also meant to be helpful, please start on the lowest dose if you try it to judge the effect. My scar tissue no longer hurts after taking the lowest dose for 2 weeks daily on an empty stomach. Please note pain does increase for a few weeks before it goes down.

endo-resolved.com/serrapept...

Please also have a look at N-acetyl Cysteine (NAC) there's a clinical study where it reduced endometriomas and pelvic pain. Something like 21 our of 26 patients on this for three months cancelled their surgeries. It is also reported that it stops endometriosis from becoming deep infiltrating.

For bloating, stool consistency and bowel pain it may help to take a probiotic for 3 months. UCL did a clinical study and Symprove was found to be the most effective (unflavoured version tastes bad so always get a flavoured variety). I have a leaflet from my dietician explaining the study and the other probiotics that are effective. Feel free to send a private message if you want me to send you the leaflet. I went for Floratrex because a small endo study indicated that endo reduces Lactobacillus levels, which means our body's anti inflammatory response is hampered. Floratrex reduced my daily pain and pain during my periods.

There are many cheaper brands such as biokult that you could try.

Both yoga and pilates have helped me.

At 1hr 20 mins of this video below there are stretches from a physio at Royal Free Hospital. They are good for the pelvic floor but many of them are good for endo too.

Resuming Endometriosis Services: What happens next?

endometriosis-uk.org/webina...

Particularly the diaphragmatic breathing, child's pose and dropping your pelvic floor in this selection below:

medium.com/@ThePelvicExpert...

Pilates for endo

youtu.be/fxDzK3ecIy4(Not working as expected?)

youtu.be/RJ7ThDFkv_I(Not working as expected?)

Be careful with kegels, most women with endo have a tight pelvic floor so kegels will make it worse.

I hope that helps and if you're in London send me a private message and I'll give you the details of my TCM doctor.

Hope some of that helps

[SasK87 in reply to TennisAM]

Wow thanks so much for this.

I take NAC daily and have always have Acupunture for my pcos.

I do find stretching relieves the pain while doing it so I’ll have a look at those videos.

I’m seeing my gynaecologist on Friday and am armed with a lot of questions.

Thanks again x

[Andiepand]

Jesus it's like i have wrote this.... exactly same as me only my son is 15 months and had natural birth

My life has been turned upside down

[SasK87 in reply to Andiepand]

Oh gosh me too. I’m currently sat on the sofa exhausted after crying for the last half hour.

Im so scared it’s something more serious.

Have you had any testing? X

[Andiepand]

It's just awful, i have servere bloating to the point i look 7 months pregnant again, i get asked when im due all the time when it swells. I get about 2-3 days in the month where it goes down but my womb still feels imflamed. Ive been anemic twice in 8 months and I pass clots on my period and suffer from awful back pain, when i'm mid cycle i get pelvic pain and stabbing pains up my rectum that it takes my breath. I bent over to change a nappy and and it shot up in my bum, i thought i had a hernia. 99.9% im bleeding out of my backside while menstrating. Got sent away with IBS a year ago and have been fighting ever since that something wasnt right. I've had ultrasounds showing nothing and put into a chemically induced menopause. Now awaiting a lap! Its just awful i truly hope you get answers too, we have no quality of life...