Endometriosis UK
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Getting diagnosed

I am writing on behalf of my 20 year old daughter. She has had very painful periods since age 11, went on the pill but it did not make any and is basically in agony whenever ste has a week off the pill.. In the last 3 months she has had two episodes of acute pain with bleeding (in her words it looks like old blood). The strongest painkillers barely touch it and she missed one uni exam as a result. We went to gynaecology clinic in Leeds and she had an ultrasound which was normal. Drs raised possibility of endometriosis especially as both her aunts had it, but said only a would give definitive answer. They also said they are wary of performing this on someone so young in case they cause scaring or adhesions. Has anyone had laparoscopy when young and did it help? And can anyone recommend any other treatments she could try? Really grateful for any advice x

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Has she tried changing her pill and also taking it with no break at all? I have changed pill a few times and also taken them back to back for a few years and whilst i did still have problems the heaviness of my periods drastically improved so it can help. I am 21 and just had a laparoscopy since having problems from age 13, everyone seemed certain it would be endometriosis but none was found so i am going to ask to be referred to a bsge centre under an endo specialist for a second look. I am almost 2 weeks since the surgery and have 3 lumps of painful scar tissue from despite having a really good and very neat surgeon. They also told me for years they didn't want to try and diagnose the endo because i was too young, i had to really beg for this laparoscopy! I have also just had the mirena coil fitted and so far have had no bleeding at all but have had period pains every day since, so hopefully it all improves eventually as it is meant to help with pain and bleeding. Sorry i know none of that sounds too hopeful, just thought sharing a similar experience is good sometimes, hope she gets sorted soon xx

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also i think the 'old blood' is due to the way the pill thins out the lining of the womb and is normal so don't worry about that!

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I'm 20 and I had a lap last month so don't let them tell her she's too young.

I would suggest seeing a specialist rather than a general gynae as they commonly miss the signs of endo as it comes in various forms that general gynae's aren't trained to spot.

I've struggled with symptoms for 7 years, the most common being the crippling abdominal pain and my gynae said my pelvis appears normal and I was devastated.

I'm paying to see a private specialist tomorrow who also works at an NHS hospital so I'm hoping he will refer me back to the NHS for another lap which he will do and I will get some answers!!

Good luck x

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for years they have said to me too that everything is 'normal' when its not. i know MY body well enough to know something is wrong. i kept bugging my GP and kept making my symptoms worse than they sound and finally i was diagnoised with endometriosis. dont pay money for private doctors just keep bugging the free ones

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I'm paying for a private doctor because I'm not willing to wait 3 months I've been told I'll be waiting to even have a consultation with a specialist when I can see the same specialist tomorrow!

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fair enough. last week they changed one my appointments so i get seen 3 months earlier then they canceled it themselves due to a x-ray machine not working then they gave me options of 5 different appointments so i took the one for the next day which i dont get. why make us wait 3 months when clearly there are appointments that can be booked for the next day. they dont take this seriously until its too late

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Exactly. I've been fobbed off for 7 years and I've felt let down by the NHS at every hurdle so I'm taking my health into my own hands and getting the treatment I deserve!! X

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Hi I had a lap wen I was 17

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I agree with Staceymacg. See someone who knows about Endometriosis. I found a consultant in Birmingham (I live in Surrey) but it was worth it because general gynae's very often don't know enough about endo and don't want to operate to treat it. I think it is fair to say that adhesions are a problem especially for fertility and pain later on in life. I had open surgery to sort my stage four endo (diagnosed with MRI £400). I paid for the MRI because the NHS gynae's and GPs I saw wasted 10 years fobbing me off. The MRI was worth it because it was black and white then-I knew what was happening. Ultrasounds are not great for picking up endo. I do have adhesions from my operation which have turned into Adenomyosis but the operation was worth it. I had my operation at 31 years of age I wish I'd have had it sooner but I just didn't see the right people and didn't have the right support. I wouldn't be in the boat I am now if I was taken seriously 10 years ago. So I would advise to see a good gynae, get an MRI scan done which is non invasive and operate if it's moderate-severe endo. Also look at diet changes. Especially avoiding Gluten and estrogenic foods such as Soya. I found cutting gluten out my diet as improved my symptoms over time. Hope this helps.

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I with Marie on that, I am same, have been struggling and getting fobbed off from Drs since I was 11, I am now 32 have been trying to get pregnant for 6yrs and it's only because I went private for fertility treatment that my endo was picked up on scan and MRI, my private dr did my lap himself on NHS and it showed I have stage 4 endo, adenomiosis, PCOS and I have to have further bladder and bowl surgery, all this could have been avoided for years and I could of controlled it with hormones so I stood a better chance at getting pregnant if I was not fobbed off for all them years, I don't really blame the GP's, I blame the fact that there is not that much knowledge about the condition which has been around for a long time and GP's should be made aware of it and young girls should be screened at a young age especially if it runs in the family and then maybe it wouldn't ruin people's chances of starting a family, sorry for the rant, it just really annoys me to know that a lot of it can be prevented, or controlled x

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i just went to a hospital last week and the doctor said same thing about scaring and suggested a MRI instead so im having that done instead even though i would rather have a lap. Go for a MRI first before the lap though. she is not too young for anything, dont listen to the doctors.

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Hey I'm 22 and had a laparoscopy for endometriosis in February. Your daughter's situation is awful and one I understand from personal experience balancing my pain with uni. Getting appointments with the right doctor, finding information and deciding on surgery is so emotional and overwhelming. Endometriosis was barely mentioned before my op and all my scans came back clear so when I woke up I was not prepared for what they had done. You are right an op is the only way to get answers and hopefully ease the painful symptoms as scary as it sounds. Just find a surgeon you really trust! I decided on surgery because I was so desperate and because suppressing hormones and taking so much medication is only masking the condition rather than dealing with the cause. It's a really hard situation for your daughter and I have been there myself. You are welcome to message me, take care xxx

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Hi love I have endometriosis I used movalte Gel make sure it's gel on the skin above the pain it actually helps so does hemp oil bur it's dog eat dog with pain killers tramadol codeine u name it I have had it. Pain gets worse at night. Fever. You can not explain the amount of pain u are in but it puts u in bed. Hot water bottles ok only while they burn you do you not feel the pain. Remember endometriosis not just located to the ovaries it can travel allover the body. Bowel. And upwards.

Good luck with managing your pain. In today nhs. It's kinda of grin and bare it because no one seems to care.

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I'm sorry to hear of your daughter's suffering.

If she's in a lot of pain, the laparoscopy is likely necessary. It's the gold standard for diagnosing endometriosis.

The best thing I did post-surgery was change my diet. I cut out sugar, dairy, alcohol, wheat / gluten, soy and other items. Supplements such as Nordic Naturals fish oil (Ultimate Omega) are reported to reduce the inflammation, and zinc, selenium and B-vitamins can help, too. A multivitamin with minerals is also worth taking.

Once the pain lifted some months after surgery and changing my lifestyle, I was able to engage in gentle exercise again which had a beneficial effect.

There's a lot of amazing advice at endo-resolved.com and various other blogs specialising in endometriosis. There are books covering the disease, too.

She's blessed to have a mother researching this for her. It sounds like you'll be a great comfort to her in the journey ahead. For the sufferer, the road to diagnosis and treatment can feel endless, sad and incredibly painful. With that in mind, if you can afford private treatment, it will spare her considerable pain and frustration. I went through the NHS and had to fight very hard to be accurately diagnosed.

If she switches her diet, M&S does the best gluten-free bread. Tesco does a great Free From range for pasta, etc. She'll also need to go organic to reduce toxicity. Coconut or almond milk are great substitutes for milk.

Her G.P. will need to prescribe strong pain meds for the times she's in agony.

There's an app called Flo which can help her track her symptoms around ovulation, period, etc.

Best of luck to you both. I hope she gets the treatment she needs quickly and that she's happy and healthy again soon. x

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