NEw symptom.

[nikkimatt2019]

Hi girls with endometriosis has anyone else had a new symptom with when u going a wee and or go a poo do u have shooting painful pains going down your legs? Lately I've been getting this new symptom even when I'm only going a wee and its painful.

[BrightLights88]

Hi, I used to have stage 4 endo back in 2018 and have surgery in 2019 since been endo free. I used to suffer from bowel and bladder movements. After having a mri I was told I had endo in my bowel hence why I had pain with my bowel and bladder. I had my liver tubes corrected, excision of endo and also removal of an ovarian cyst.

[Endo_Jaded in reply to BrightLights88]

That’s amazing you’ve been Endo free for this long. I’ve so many friends that have only made it max 22 months before a return sadly, even with hysterectomy. And a friend who made it a total of 32 days scarily!

It’s always good to hear positive cases. I dream of being pain free, or reduced pain! Endo caused Fibromyalgia so maybe that would decrease in flares too.

Although, my endometriosis is hereditary so fingers crossed I get some relief after my hysterectomy. Sadly, all my organs are gone except my right ovary which is clean as a whistle and holding strong.

Sending endowarrior love 💛 🎗

[BrightLights88 in reply to Endo_Jaded]

After having covid in the 2nd wave I started getting flare ups that was mild enough to not be in hospital but bearable to stay in bed. I then was recommended to have the coil fitted in to help me, I had the coil fitted in Feb 2022 and since had no pain in pelvic or lower abdominal area since. Period has been pain free and silent. I know a lot of people who had hysterectomy and nothing has changed for them.

Have you used a tens machine to help relieve pain. I used to get pins and needles/pain on my left leg to the point it would go numb and I wouldn't be able to feel sensation and would sometimes have little accidents in my underwear. I had physio and they really took it seriously to help me relieve the pain so I don't loose my sensation for good. Tens machine was very helpful. But the only way out of all this is to have surgery and remove the endo growth and cyst. Otherwise the pain just gets worse. Seek help outside of your area if need be check on the bsge website to see where is the nearest endo specialist centre to get referred to by your gp. All the best. x

[Endo_Jaded in reply to BrightLights88]

Coil isn’t something I would ever have, it’s just not for me and working with several girls in similar positions who all had negative experiences with the coil just solidifies it for me.

I’m in the legal industry and there’s just to many medico-legal cases to count were it involved the coil, or Lupron and the serious negative consequences of these being approved and or pushed on patients as only options. This seems to happen not just with coil or Lupron/Prostap but other areas.

That is very true, many women have a hysterectomy and nothing changes or something can be worse. Some it’s the best decision they ever made. Personally, for me it’s a lifesaver! I don’t want it and if there was an alternative, i would be all over it. But sadly, I wiped the Enzian Scale for endometriosis and have been obliterated by the disease –been a long time growing and masked by the hormone suppression– hysterectomy is now the only option since I have frozen pelvis and serious bowel involvement.

I’m currently in menopause only chemically with Synarel, it’s the first line menopause drug that should be used but because it costs £65 a bottle in UK, or £2K without insurance in the US they avoid using it and opt for the lessor. I’ll never be more grateful to Dr Andrew Cook for clearly detailing how he would treat his patients in the US, and why too. I think honestly his book saved me and taught me that endometriosis is something that they could have invested in but didn’t but also pharma has a massive hand in what’s highly prescribed. Out of the girls I mentor they’ve all be forced onto the same path of treatment sadly. So I advocate now for woman to ask their doctors why, and what’s alternatives.

Isn’t it wonderful to have a pain free period and a break from all that unnecessary suffering. I take that over anything every day. Doesn’t matter how someone gets relief as long as it happens and they’ve been informed on their treatment completely.

Yes, I own a Tens machine, a ThermaGun and several of those trigger point and cushion rollers. I’ve tried it all with my leg, the last hope was medication. My GP understands that when I call to speak about medication I don’t want an increase, I want relief 😂. My transdermal morphine like patch goes to 20mg but can be used to a max of 40mg and I’m on 15mg currently with 30mg codeine as I brought them down too a level. This is why we opted for Gabapetin especially with my fibromyalgia too.

I may consider as you say physio, this is covered in my private healthcare so many be beneficial to try and utilise some sessions. I know they can’t fix the endometriosis on sciatic nerve but maybe make it more bearable on the bad days.

Unfortunately, everyone always seems to suggest BGSE specialist centres (I assume thinking I didn’t research or know) but here in NI, we are the most impoverished member country of the United Kingdom. Our healthcare reflects this, by ways off we train up fabulous Doctors/Nurse/Soldier –some of the best in the world– but we lose them to better prospects, better pay and better life in other countries. So, the two ‘provisional’ BGSE Clinics we have— have been provisional for 5 and 10 years respectively.

I fought under Nice Guidelines and direct communication with the lead surgeon in the main clinic and obtained a second opinion from him (he only runs the clinic on the 1st of the month) and he seconded the proposed plan of action for me. Excluding the ovary! He thinks I should retain the ovary.

However, if I ever get the BRCA1 &2 test I have requested this would inform my decision further and I wouldn’t keep the ovary at all.

Im a firm believer in advocating for yourself, sharing your story with others and offering options and alternatives –but never penalise someone for whatever choice they need to make at that time even if it isn’t what you would do. I guess everywhere you look there’s a negative or a positive to everything. So many sealed legal cases on negatives of Lupron/Prostap but for some of the girls I mentor it’s been their saviour. It’s just not for me.

Guess we are all on one big journey to pain free, with the least amount of reliance on medication or repeat surgeries especially with each surgery causing even more adhesions and pain long term.

I’m so glad you found relief and it’s such a good positive light for girls still in the dark with pain - sometimes we just have to do what we need to life our lives a little… since endometriosis and lack of funding are adamant to fight against our happiness.

[Endo_Jaded]

Hey, I’m on Gabapetin now due to the pain shooting down my leg. It will start maybe at the bathroom stage but it –usually–gets more frequent.

I’ve been stuck in a little country (NI) that the endometriosis care is essentially that poor it may as well be non-existent! I was an urgent surgery pre-covid and was delayed even at urgency! I knew people referred, seen, treated and operated on all from 2019 and during covid and I’ve been waiting since 2017. Now likely losing some bowel…

I digress.

Get yourself the app GeoPain and record your pain and create a pattern. Monitor and analyse! If the leg pain starts to progress away from bathroom habits too, I’d recommend firstly highlighting this too Dr/Surgeon/Consultant –but then usually seem dismissive of leg pain– so… I’d secondly recommend a pelvic MRI either referred or private. It would suggest to be that you have endometriosis either on nerves/sciatic or cyst/enlarged area pressing on a nerve or collection of nerves.

I’m on Reletrans Patch 15 [Daily Pain] and Codeine [Breakthrough] and Gabapetin now [Nerve Pain]. Synarel [Chemical Menopause] and Tibolone [HRT] with Ketoprofen Gel [Topical Pain] and you wouldn’t think I despise chemical medication but that’s how severe it all got for me.

If you need anything or just to change DM and I’ll try and help as best I can.

Definitely get GeoPain and record everything even food that disagrees with you.

[Escapologygirl]

I just get the shooting pain all across my bowel like plaster chunks coming off the wall feeling and my right leg just starts involuntarily jerking and sometimes can feel a little like deadweight