Is my endo coming back?: I had my first... - Endometriosis UK

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Is my endo coming back?

Chloes161290 profile image
10 Replies

I had my first laparoscopy in February 2015 at the age of 24, I had it removed from my appendix, on my bowel, on my urethra and bit on the bladder and it was behind my womb which they left as I hadn’t had children at the time.

Within the last 4 weeks I’ve had 4 urine infections but the odd thing is, they have treated me with anti biotics but when the samples have been sent off there is no infection detected. The pain is different to a normal UTI (I only know as I’ve had so many in the past) I’m in a lot of pain, real discomfort and it hurts after intercourse like burns so bad and I feel like there are bones or something rubbing together in my lower abdominal area... has anyone experienced anything like this? I feel I’m going nuts 🙈

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Chloes161290
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KkAnne profile image
KkAnne

Hello,

Not a dr or anything but if you had endo on your urethra it may be that it’s grown back?

I have pelvic floor issues due to my endo which makes all my muscles too tight and it gives me a burning sensation like a UTI. I’m wondering if your endo has grown back or if it’s actually that your muscles have gone tight- this can also happen as a reaction to your body trying to protect itself when in pain.

Would be worth trying your gynaecologist or asking to be referred to women’s health? xx

Chloes161290 profile image
Chloes161290 in reply to KkAnne

Thank you so much, I think you’re right, they have tried saying it’s urethral syndrome which causes spasms but it hurts so much and at times burns I don’t think it’s what they are saying. I’m waiting to have bladder scans and a camera, so perhaps after those results I’ll know more and perhaps be referred back to gynae. Just annoying because I don’t like to try and self diagnose but as soon as I mention endo to my doctors they don’t want to know :(

Hello Chloes161290

Unfortunately, a laparoscopy is only a temporary fix. Endometriosis feeds off oestrogen, which gives it the energy to grow, that is why a lot of women have several laps through out their lifetime.

Oh the joys of being a woman🙄😉

It might be worthwhile going back to your GP, to ask for another referral to the Gynecologist to discuss.

Many women find intercourse painful and even impossible with endometriosis, but there are solutions, i.e:

Different positions during intercourse, lubrication gel, hot bath before, use of sex toys etc - It all depends on your relationship and partner.

It might also help to enquire about getting some specific painkillers for muscle relaxation. My GP prescribed me Mefenamic Acid 500mg Tablets to help with my endo pain. Turmeric and ginger tea, also have anti-inflammatory properties, which can help.

Vitamins can also be beneficial in this area and, if drinking milk in Tea / Coffee, try and get unhomogenised milk from Tesco or Waitrose.

Hope this helps a little.

Best of luck

CatPaws🐾

Chloes161290 profile image
Chloes161290 in reply to

Aww thanks so much for you comment, that’s really helpful, I don’t generally get pain during intercourse it’s weirdly the next day. I’ll give everything you said a try, what is that milk though you mentioned? Never heard of that, it’s so frustrating I don’t feel the GP listens to me but I’ll mention gynae to him, I’ve got to go back to the doctors next week as I can’t cope with this pain, they prescribed me these tablets for urethral syndrome where you urethra apparently can spasm given you symptoms of a UTI but I’m not so sure it’s that. Thank you

in reply to Chloes161290

Hello Choles161290

I am glad this has helped. Most milk is homogenised, which means it is put through a machine to have all the cream (fat) taken away.

Homogenised milk is one of the worst things for endo, as it is one of most inflammatory foods out there.

Unhomogenised milk is where the cream is left on top.

Tesco Finest Channel Island Whole Milk is the one I use.

These links might be helpful:

healthwyze.org/reports/570-...

kendraperry.net/5-top-foods...

Although it is not mention on the first web page, it is recommended to try a gluten free diet, avoid Soya and sweeteners.

I don't pay much attention to avoiding alcohol. I would like to see someone try to take my Friday Night glass of wine away from me 🍷😉

I also take vitamin B complex, Vitamin E, Zinc, Vitamin C (time release), and vitamins A & D in cod liver oil.

Landy's Chemist online is a good source to obtain vitamins from.

Best of luck

CatPaws🐾

Chloes161290 profile image
Chloes161290 in reply to

Ah fantastic thank you, I never knew that about the milk, I’ll take a look in Tesco 😁 ill also have a look at those vitamins thank you.

Unfortunately I have coeliac disease too, so already on the gluten free diet.

I think I’ll also keep the alcohol 🤣 I enjoy a glass of wine every once in a while 🤣Thanks for your reply.

Chloe

in reply to Chloes161290

Hello Choles161290

You're welcome. I'm glad the info was helpful.

Lady after my own heart when it comes to wine😉🍷

Best of luck. I hope you will be able to get everything sorted out soon.

CatPaws🐾

Chloes161290 profile image
Chloes161290 in reply to

Haha and thank you 😁

scouterpuff profile image
scouterpuff

I went through a similar situation with the negative on multiple UTI episodes. Painful! Antibiotics were minimally effective, then it would come back. Tested negative again... so aggravating.

These incidents coincided with what they thought was bursitis in my hip. Months after I took steroids, and I was still waking up in the middle of the night sobbing from the pain shooting up into my left abdomen and down my leg. I got fed up and went to a new gyno who was actually very knowledgeable. I was convinced this was all happening because my endo came back. He told me that this probably wasn't endo itself, but rather the nerve and muscle damage I had from my endo and subsequent surgery. So, I went back to my pelvic floor physical therapist (my angel!) and she treated me with dry needling. I am so much better now.

I agree with KkAnne... a lot of what I experience now is because the damaged nerves in my pelvic region get over-stimulated and fire off pain signals, forcing the surrounding muscles to seize up.

Chloes161290 profile image
Chloes161290

Thank you for your comment. It’s nice to hear I’m not the only one who has experienced these UTI symptoms, it is so painful it wakes me in the night, I’ve got upcoming scans on my bladder and a camera so I might just have to push through this until then and see what appears otherwise I’ll have to push to be seen by gynae again, it’s a difficult one too as i have the coil fitted so I no longer have my cycle which used to be a good indication as to when my endo was bad 🙈

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