My daughter of 14 had her lap 4 weeks ago and removed a small piece of endometrosis and scar tissue but still has the pain she has had for 2

[kelseygrindley]

Years she is so upset as thought the pain would of gone and she could get back to normal. Is anyone else still have the pain .

[Brownlow]

Hi Kelsey,

Really sorry to hear about the return of the pain for your daughter. What type of specialist operated? If it was a general gynae, they are often not skilled at spotting all endo. An endo specialist would possibly be better. Endo has a specialism all of its own that reflects the complexity of this condition.

Endo specialists can be found here bsge.org.uk/ec-BSGE-accredi...

Many of us on the forum experience a return of pain soon after an op or several years after. I'm not sure but maybe there's a possibility the pain is the healing process?

I hope her situation improves and if not, you manage to find someone better equipped to help her. x

[Timothy31]

Hello, I'm sorry to hear your daughter has this disease at such a young age!

I personally have had the endo pain for as long as I can remember. I'm currently 17 and had my lap done at the end if March. I'm still in the exactly same pain as before, i personally think it's worsen since march. I've been told I have stage 4 endo and will require major surgery to remove all of it from my bladder, bowel and all of my tubes and ovaries and bits. it's very hard yo treat endo because it keeps growing back. Your daughter might benefit from going on the pill to stop the endo growing. I've found being under 18 it's so hard to get good pain killers from my doctor so I basically live on iburprofen and cocodmal. Some people try diets to help with the pain or castrerol oil packs for when they're in pain. I hope you find something to help! If your daughter ever needs to talk to someone about this my inbox thingy on here is always open for her! Wish you both lots of luck xx

[Catness]

Hello - I think the suggestions above are good ones about the endo specialist. Also it is worth considering that her insides will still be healing at this point and periods often feel really painful for the first couple of times after a lap. This is due to the blood irritating the operations sites where they are trying to heal. It may be worth looking at diet as mentioned by Timothy 31 as I follow the endo diet and it has reduced my pain and bloating considerably. If you aren't familiar with the endo diet the google 'endo resolved'. It works by cutting out the foods that produce excess oestrogen which feed the endometriosis. It is strict and annoying and it's hard enough at 24 let alone 14 but, it made me feel a lot better and a lot of other ladies too. Essentially it's no sugar, gluten, red meat (although I don't eat any meat at all) caffeine, alcohol, processed foods, soy etc which leaves you with an almost vegan diet. I have also found the diet to help my endo- related bowel pain.

Depending on how she is and how you go with the specialist endo centre referrals the other option is to research a endo specialist who does both private and NHS work. Pay to see them privatly (this will cost in the region of £150-200) and then ask to be referred back into the NHS for treatment. This cuts out a lot of the waiting time and ensures you get to see someone with an expert knowledge in the disease. I have used this method 3 times now and am having my third surgery next week having only been diagnosed 11 months ago. Sadly it is quite common to have to need multiple surgeries.

I hope you get some answers soon! Xx

[Erin-Mum]

So sorry to hear that your daughter is still suffering, and has been for the last 2 years. My 14 year old has only been suffering for 7 months and had her lap on Thursday. Currently she says the pain is 'different' and not the same as it was and i am hopeful that the widespread superficial endo that he removed has worked for her.

We went private for her first consultation and saw the Gynaecologist that she would have seen on the NHS, This cost £160 and he then prescribed her medication through her gp (to save us paying for prescriptions that would be free otherwise) and saw her again within a month on the NHS, resulting in us saving months of waiting. We were told at the Nuffield that they would only be able to assess there and that she would have to go back to the Nhs because of her age (cant treat under 16's privately apparently as they have to have paediatrics as well.)

He has also prescribed continuous taking of the pill so as not to have periods (although she may get some breakthrough bleeding for which she has Transexamic acid and Provera). So at the moment we are waiting to heal and hoping it will give her a few years grace from the pain (he said it will probably come back, but she may get as much as 4 years)

Having read lots of posts on this site I think we've been very lucky to have action taken so quickly (although the last 7 months have felt like a lifetime as she hasn't been able to go to school.)

Wishing her (and you) all the best - you just want your 14 year old to be able to be 14!

[LeyaC]

I had my first lap at 16 after 5years of suffering. I'm now 18 and having o have another lap because of the pain. My first lap was just diagnostic and there was no removal whereas this one in July will be so hopefully there will be a difference. I'm now experiencing pain in my back, ribs and shoulders too so my specialist is going to look at my diaphragm too.

Unfortunately there isn't a cure so no matter what your daughter is going to be in pain for the rest of her life unless they find a cure. It can be controlled with pain killers and contraceptives. Many of us on here have either the mirena coil, implant, pill or use menopausal injections like zoladex (which is strictly for over 18's due to side effects) to help with our symptoms and keep the Endo at bay as it feeds on oestrogen. These will also help with her periods by either stopping them or slowing them down and making them less painful.

You can also use painkillers although it is hard o get the right ones, like I say I've been experiencing Endo symptoms for about 7 years now and I still haven't found the ones that work for me. There are plenty on the market and unfortunately for me, only Entonox (gas and air) works for me.

I hope she feels better soon but just know that recover time differs so she may take a while to heal properly. Feel free to pm me if you like for either your questions or your daughters, any of us on here are happy to help

Leya xxx

[givemeananswer]

Hi kelseygrindley,

May I ask where the endo and scar tissue was spotted? Did you yourself suffer as well?

I am an endo sufferer as well, have been since I was your daughters age too, I'm now 50. I wasn't ever more than a stage 1 but I can honestly say that has nothing to do with the pain one endures. I managed to have two healthy full term pregnancies at age 25 and 29 as I wasn't dignosed with endo until after their births. I got by on naproxen for period cramps but then developed IBS. Be careful how you medicate.

My daughter is now 21 she has not been diagnosed with endo but is mimicking a lot of the same discomforts I had at her age. She decided to try a gluten free diet, also eliminating onions and garlic and eats very little red meat. It has helped her attendance at college and she is also working part time and has a social life, where as prior to the diet she stayed in a lot.

Be careful when selecting the birth control pill that you check with the ladies on this board for feedback some contain oestrogen and will make things worse. Not all GP's take that into consideration.

The key I think is to prevent things getting worse is to avoid all sources of oestrogen. I didn't know this back then, this board has taught me so much I just joined a couple months back.

I later discovered when the pain was no longer just at that time of the month it was throughout the month with maybe one day of grace. 3 laporoscopies with 1-2 years of relief from back pain and ovarian stabbing pain but with the last the relief didn't last, keeping in mind I had already had all the children I planned on having and my periods were getting much heavier with large clots(sorry if that's TMI) but they did an ultrasound and suspected it was early adenomyosis as the uterus was looking inhomogenous. I opted for a hysterectomy but kept my tubes and ovaries. My cervix was removed because I had also been dealing with metaplasia and didn't want to risk cervical cancer. It eventually(took a couple years)gave me relief.

In your case since your daughter is still so young and has her whole life ahead of her she may want to consider a method of treatment that prevents her from bleeding. Perhaps the mirena coil I don't know but I would encourage you to get some member feedback on side effects risks ect. carefully before any suggestion from a doctor, as these ladies have actual experiences to share.

I would also encourage you to get your daughter tested for other possibilities as well. Perhaps a colonoscopy. As the pain in our colon can be mistaken for endometriosis pain. Even though she has been diagnosed with endo she may also be suffering from food allergies or such. So that's another aspect to have investigated. Anything she learns to help her cope with less pain, and do less injury by means of medicating.

It's tough seeing our kids suffer, hope this helps.

With hugs,

givemeananswer