Endo newbie, lots of questions and agonis... - Endometriosis UK

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Endo newbie, lots of questions and agonising pain!

Jess_cole
Jess_cole

Hi all,

I just found this forum and so far have found it super helpful. Has anyone every experienced what I have (I’ll list them now)

-Light period but pain so severe it makes me cry and feel sick

-Super irregular periods

-Cramps everyday of my cycle

-Worsened pain after eating

-No period since the 19th May, (neg preg tests)

-Passing Black stringey tissue

-Super bloated belly

-Agony during sex deep in my stomach

I’m relatively new to endo and ovbs haven’t had the operation yet to determine it 100%, but the doctors have put down my symptoms to it and they don’t seem to be helping very much tbh. I’ve been to A&E 3 times in the last month which is embarrassing because it’s my place of work. Two female doctors were so understanding and the last male doctor made me cry and said he doesn’t understand why 111 keep sending me back there.

I feel at total loss, I feel so uncomfortable 24/7 and in so much pain. Nothing helps, no pain relief and I feel like people think I’m over reacting. I think I’m going to be on the list for the op for a very long time and I don’t know what to do in the meantime😓

Thanks all, hope you can guide me, -J

21 Replies
oldestnewest

Hi

Ask your GP to refer you to the pain clinic, as urgent if they can. I think many will relate going to A&E for this due to lack of support. A pain nurse last week prescribed Tramadol, and along with paracetamol may be helping a bit.

You should speak to HR about occupational health. They should have an amazing set up given the circumstances. It might be worth making a complaint about the male doctor as well, it’s not necessary for them to be flippant, they are supposed to learn, do no harm.

I was diagnosed last December, so fairly new to it, likely had it years and always had irregular periods with pain.

Wheat bags help sometimes

Hope you can find something that works for you

Thanks so much I’m seeing her again Monday and want them to properly listen and try to do something sooner. I use hot water bottles and appreciate the advice x

Hi!

Has the possibility of the contraceptive pill or polycystic ovaries (PCOS) ever been discussed. My PCOS was making me extremely irregular and im now on a contraceptive pill, despite trying to avoid it.

Hope you get some more help and explanation soon!!

Jess_cole
Jess_cole in reply to megttocs

Hi, yeah I’ve been on allsorts of contraceptive pills and I had to come off as they were causing me allergic reactions and other personal issues! PCOS was mentioned but they ruled that out about a month ago. But thank you for your reply x

Hello!

Ask for a referral to a pain management and endo clinic. Make one list of symptoms and one of questions to ask the doctors. Bring a pen with you to make notes on treatment options too. Inform the human resources department of this doctor who is not professional. Have they talked about the contraception pill or not?

Mention the severity of the pain too. Request a referral to see a urologist in addition. Good luck. I find a hot water bottle helpful when my pain is terrible. You are in my prayers!

I'm still waiting treatment after being diagnosed in January, and the only pain relief I have found to work is hot water bottles and CBD oil.

I wasn’t sure if CBD worked for these conditions and you’re the first to say it’s helped so I will get some, thank you 🙏🏼

Its the only thing to really help me cope with the pain. I cant share this fact enough! For me, I was newly diagnosed in immense pain and unable to walk due to the pain radiating down the nerves in my left leg. It probably took a few weeks of daily CBD oil but it gave me my life back at that point as before I was stuck in bed and in extreme pain and now I'm able to work part time and drive again. Im still waiting for my first appointment with an Endo consultant to discuss treatment, but at least I'm now able to cope while waiting. I buy CBD oil from a company called Hempura, CBD sweets from Starpowa and CBD gum from 2 wise monkeys. I hope it helps you x

ChezE
ChezE in reply to MissMarlene

Hi, I'm looking into CBD options for pain relief for endo and wondered if the Starpowa sweets that help you are the 5mg or 15mg ones? I have had pelvic pain on and off for 18 months but it has become much more severe recently and GP thinks it's endo. I also have had pins and needles in my feet for about 9 months, not sure if there's a connection with the endo, I'm waiting for appointments with consultants x

MissMarlene
MissMarlene in reply to ChezE

I buy the 5mg Starpowa gummies and have 2 daily as they recommend. If you need more during the day you can easily just take an extra 5mg at a day. CBD oil takes time to build up with your doses so its better to start off slow. Hope it helps xx

You and I have basically the same symptoms and I have recently been put down for a laparoscopy. Chronic pain is EXHAUSTING and very few people seem to understand how much it affects your mental wellbeing as well as physical. Makes you feel unattractive/ not good enough because it hurts to do anything among other really unpleasant feelings, especially when people don't believe you. I know it is easier said than done, but ignore those people. Your pain is valid, it is real and it not only affects you, but many other women. You are not alone and you can get through this!

Wow I’m glad I’m not the only one! It definitely is exhausting and nobody else understands. I am waiting for a laparoscopy as well, but can see that being awhile. Goodluck with yours! I hope you get some answers soon x

Any Gastro or bowel problems?

Jess_cole
Jess_cole in reply to 3caramel7

Just constipation unfortunately

3caramel7
3caramel7 in reply to Jess_cole

Are you on any reccomended diet? Are you taking anything or treating the constipation?

Jess_cole
Jess_cole in reply to 3caramel7

Not a recommended one, but I’m vegetarian out of choice and eat quite healthy. I take shop bought senna to help with when the meds build up.

3caramel7
3caramel7 in reply to Jess_cole

Have you tried being gluten free or ever given up dairy?

Do you take Probiotics?

Have you heard of the fodmap diet?

Jess_cole
Jess_cole in reply to 3caramel7

I gave up dairy for a month last year to see if I had an allergy but it didn’t stop my symptoms

Look into self heal jess. Had endo and chrons the swelling of endo i felt like I was going to explode until I tried self heal a little weed that is found in most people's front garden after years of torture scans steroids drugs u name it nothing worked for long one cup of herbal tea with 4 flower head took the swelling and pain away in 4 hours. YES 4 HOURS.

Worth a try.

Google it its in flower now and easy to find

All the best hope it works for you too. I feel amazing for 1st time in years.

My recommendations would be to find a good probiotic and see how that goes.

Then try gluten free diet for at least 4-6 weeks for starters....

Hey, I totally understand as I have really similar symptoms to you. For the last 6 months my periods have started to get really light and for the last 4 months I’ve had the most excruciating pain which starts a week before my period (my cycles are irregular so I never know exactly when this is going to hit). The first time it happened I was admitted to hospital with suspected appendicitis. The pain has been causing me to faint and vomit. Never felt anything like it.

I’ve been with an IVF clinic which is who actually suggested it could be endo and then during an internal scan they found I have lots of large cysts on both ovaries and suggested this will be what is causing the severe pain. I’m now waiting to have an operation to remove the cysts, so I can continue with IVF but also hopefully the pain will be reduced too.

Please keep going back to your doctor until they do something about it.

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