Since christmas she has been so unwell in unbearable pain. She was told she has Endometriosis and has been reffered to gyneacology- but its a 33 week wait. Since then we have been in and out of a&e and multiple drs app.
Weve seen a private dr who has said it isnt stage 3/4 ( which i guess is good) but due to age he isnt keen to operate.
Shes on cocodamol for pain, mefenamic acid and Tranexamic and put on yasmin pill to try and help- but nothing does.
Now shes sick everyday. Shes still in school and taking exams at the present time but since xmas shes been so ill with this some days unable to walk due to pain. Everything has taken a hit because of this. Feel like we are going round in circles and no one wants to help. Any help advice in what i should /can do/ be asking for?
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Lillysmum
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So sorry she’s going through this, it’s not easy at any time.
Nefopam is quite strong painkiller and non opiate. I doubt the GP wants to increase opiate type med. I was put on Tramadol by the pain nurse, she said it was better than codeine based meds. It helped a bit. I find Oramorph is the main one for me. I practically live in a rechargeable heat pad, I have spare batteries so it’s always on the go.
Some consultants will do surgery on teenagers for Endo, it’s a very difficult decision because of potential adhesions from surgery.
Has she had an MRI? It’s also important that after a diagnosis of Endo nothing else is missed. It’s easy enough to do these days as drs get tunnel vision with Endo diagnosis.
Thank you. They said they wont put her on anything stronger than 30/500 cocodamol. Weve been prescribed some anti sickness today but side effects say about making you drowsy ( which isnt great as the cocodamol already makes her drowsy plus with her exams she needs to be coherient as much as possible).
GPs don’t like opiates especially when young. Nefopam is more expensive for them to prescribe but doesn’t have the potential addiction as opiates.
The other factor is GPs just don’t understand how bad the pain can be and unbearable. It’s important for them to take into account her mental health in trying to put up with the pain and need to make allowances for that. It’s a fine line but them being closed at cocodamol won’t help on really bad days. The fact it’s everyday pain should be a concern for them.
I’m so sorry your daughter is struggling. As someone who started with symptoms from the time my periods started I can relate.
How long has she been on Yasmin and how is she taking it (what pattern)? Is she having bleeds on this as you’ve mentioned mefenamic and tranexamic acid too? The combined pill for women with suspected endo is best taken daily with no break -this pattern is also now advocated by the faculty of sexual and reproductive health for the wider public too so shouldn’t be unusual for GP.
Have other diagnoses been explored eg if gastrointestinal symptoms has she had coeliac and IBD tests?
Second the TENS talk - Breuer menstrual relief USB rechargeable with heat function is good (having two and swapping them is useful if you can afford, I wear on my lower back as most helpful).
How do they know it’s not stage 3/4 without laparoscopy? I have severe rectovaginal endo that was not seen on any NHS scans.
Hi thanks for your reply. Yes the private dr is accredited they did an internal exam as apparently you can feel stage 3/4 but lower stages arent as detectable.
We have a tens machine and heat pads but she says it doesnt do anything.
She was taken off of the combined pill and put on the yasmin.
No i keep.asking if it could be something else but they say its not as scans show it- but im not sure anymore. Today she was given anti sickness meds which symptoms say will make you sleepy/dizzy. I feel like they are just sticking with Endo and no one cares about making her better.
Bottom line is that staging does not correlate with pain anyway. And while it maybe be true to some degree about nodules lower down I don’t think he can say 100% based on internal.
Do you mind saying what was found on ultrasound? If there’s endometrioma that instantly makes it stage 3 at least.
You can have more than one condition at once. I have coeliac disease and endo. Others I know have IBD and Endo. Endo is part of spectrum of autoimmune diseases so common to have more than one.
Yasmin is a type of combined pill. I take it she was started on a standard cheaper type like microgynon/rigevidon and then swapped to Yasmin. She can take Yasmin every day without a break if not doing this already. She might get a little spotting to start but it should settle in 2-3 months. The constant breaks with traditional method won’t help so taking it continuously is best. This explains tailored/continuous pill taking ouh.nhs.uk/patient-guide/le...
There isn’t an issue taking mefenamic and co-codamol. I know a fair bit about pharmacology and it’s safe.
I hope you find a doctor who is more empathetic and willing to explore every angle.
The Breuer menstrual relief TENS/heat pad doesn’t take the pain away fully but it just helps to take the edge off. Sometimes reframing that pain relief is about reducing not eliminating pain is helpful for understanding and setting expectations. Otherwise it just leads to vicious cycle of disappointment.
Many endo sufferers find cutting out lactose and gluten helpful (after tested for coeliac as going gluten free before can ruin accuracy of test). Also low FODMAP can help identify trigger foods. Peppermint is useful too (tea, capsules)
Sorry if someone has already said this, but worth taking a double dose of the yasmin for a few months. I found that that eventually stopped my bleeding and it has helped with the pain a lot.
Theres a good book that I read by Dr Anita Mitra called Dealing with Problem Periods - it outlines different things you can try including medications for multiple illnesses affecting periods. Could be good for you and her to read it and see if theres any thing in it that can help form a plan.
Really sorry for your daughter, she doesn't deserve to be left in pain like that!
One other thing is you can buy stick on heat pads to stick to your underwear. Even just on amazon. Could make school a little more comfortable and they are nice & discreet x
I’m so sorry she’s going through this, I had a similar experience at the beginning of my periods and when I was first diagnosed. I used to pass out at school all the time so I totally understand.
I am surprised she’s been told to combine cocodamol and menefemic acid. I’ve been on the latter for 3 years now and was told not to combine it with anything else as it could make you really ill. I would check on that, I’m pretty sure the leaflet says that too. How often is she taking both?
On the TENS, the machine is a life saver. Like many others said I use to one on my back and one on the front on the worse days. I would definitely look into them!
I would also push for an MRI. My endometriosis tissue wasn’t visible on ultrasound as it was behind the uterine wall and looked very little until I had a laparoscopy and the surgeon found it was attached to my bowels. If the MRI didn’t show the “little” tissue I probably would have not been seen.
What I would also say When talking to GPs and gynos about this be stern on what you want. It’s their job to give you the appropriate care for your daughter. A lot of private clinics will see you as private consultations and then put you on a faster NHS plan, so you don’t have to worry about the bill at the end.
Hi. Oh really she is taking menefemic acid 3 times a day and cocodamol 4 times a day I will question this with the doctor- im hoping to get an appointment today if possoble.
We have the tens machine too but she says it isnt doing anything for her.
this sounds so much like me at that age that I second took. Have the doctors looked at something called ‘functional abdominal pain syndrome’? I had that from 8 up and it got progressively worse - it was described to me as similar to a migraine only in your stomach - no tests will show anything up but BOY! can you feel it! Very little hole and I was on high doses of codamol for years, too, and since having an endo diagnosis, have been convinced that it was linked. Mostly this can be triggered and made worse by stress, which is unhelpful when it’s pain to begin with - the pain triggers more stress and - vicious circle. If it’s something like this I’d say attempt to get her referred for pain clinics and CBT. You can self refer for CBT and that can only ever help, a pain clinic would be useful regardless, too.
Unfortunately there’s little you can do re: endoscopy push the severity and her age with the docs and hope they are able to mark her down as urgent. The waiting lists are crazy and especially at her age it’s got to be weighing on her. I’d look at any kind of supplements that may help, so perhaps starflower and evening primrose (always check with GP but they def should be fine), and when she can possibly manage it try yoga and gentle stretching exercises. Theres a fascinating site called healendo.com and the lady on there goes through the best meal plans, diets, and exercises (because there are a few best avoided) etc, and the science and lifestyle choices. I’m sorry I can’t be of more help. It’s always rough but for a young lady who is essentially still a child - it’s beyond horrific. I wish I could help more.
Yes I remember Endo at 16yrs. Lucky your daughter has the prognosis so early.The doctor in the shorterm should be able to put her on the Pill continues. So she won't have periods.
A TENS machine can help. The setting is often for back pain. Set pads on hip sides not on stomach. Switch on setting about 3. Once the brain feels the pulse turn down til its a tiny, tiny tickle. In about 10mins the pain will drop away. You may choose to drop the level to 1. The TENS machine gates the pain from the spine to the brain. I doubt at 16yrs they will want to do any operations as longterm over the yrs she will need more. Each operation causes scars. Unfortunately the many operations over time will bedded the interior down and could lead to organ lose in later yrs.
Drugs like Zoladex and steriods Danol will slow down but all drugs longterm aren't good.
Endometriosis is a long term disease. There is no cure.
Belladona and Fennel Tea can help with cramps and inflammation.
Many women find the transition in bowel is effected as is digestion. Cutting out hard to digest foods. Myself I cut out gluten first, then yrs on lactose. Foods that contain Estrogen is a good idea to leave out like Soya especially but there are several others. Other foods also with Sugar where possible. Prebiotic to help gut, simple tablet from Holland&Barrett. Anything to help the body deal with the control of the symptoms of the autoimmune disease Endometriosis. Antihaistmes might help if she has other illnesses like Asthma, Hayhever, Allergic responses etc. This all helps with the swelling, bloating and general inflammation throughout the trunk of the body.
I'm so sorry for her suffering, bless her. Regardless of what stage it is, she's in a lot of pain. I have stage 4 and I only have pain during sex so the stages aren't always an indicator of pain severity unfortunately. I don't understand the doctor's decision to not operate due to her age, it sounds like she's completely debilitated... why let her continue to suffer and have it potentially get worse! The painkillers and the pill aren't working for her. She's young and would bounce back from surgery so fast compared to us oldies lol. Also without a laparoscopy, there's no way they can say for sure what stage she is at. All my scans were totally clear even though I have stage 4 (diagnosed via lap) with multiple organs fused together.
If I were you, I would 100% pay to see a private gyno who specialises in endo. Preferably one who works privately and also with the NHS. Then whatever they recommend doing, they can write you a referral to the NHS to save time. For example, if they recommend a laparoscopy, the gold standard for diagnosing and treating endo, then they could write a referral letter for a laparoscopy to a gyno on the NHS who specialises in endo. Saves a lot of time and faffing around. For 50% of women, the endo does not return after excision via laparoscopy. Where are you in the country? Xx
PS - In the meantime what's her diet like? Is it high in refined sugars or simple carbs like white bread?
Hi thanks for the reply. It was the private endo dr that said he wouldnt do surgery at present- he says too many complications at her age. Our local gp has reffered to hospital and we are on 33 week waiting list for a first appointment. Im hoping to get a letter from gp that will apparently push her up the list but im not overly hopeful.
Ah I see, if you have the money, definitely worth getting a second opinion. A second opinion is what got me referred for my laparoscopy. Otherwise, I'd still getting tossed around between gynos and offered the pill which I have never wanted to take (bad experiences with it when I was younger).
Diet is very important with endo. Cut out or way back on refined sugars, dairy and processed foods. Add in as much fruit and veg as possible with lots of flaxseed ground (1tbsp per day) and turmeric (1/4 teaspoon per day), both are anti-inflammory and help a lot. Check out the 'how not to die' book by Dr. McGregor. Best of luck to you both.
I remember being in your daughter’s position, periods were affecting my daily life so badly!
The pill helped me but it took a while before I found one that suited me. If Yasmin doesn’t improve things I would ask the doctor for another one.
In terms of pain management many other posts have given great advice.
Endometriosis is driven by estrogen and causes a lot of inflammation so targeting those two things with supplements can help. I follow “theendospectrum” on Instagram and find her posts very informative.
Omegas and turmeric are recommended for endo as they reduce inflammation, and N-acetyl cysteine has been clinically proven to reduce the size of endometriomas. Some brands do supplements that combine multiple ingredients, there is one called MyEndo by a brand Myoovi which I haven’t personally tried but I’ve bought most of the ingredients separately.
Identifying dietary intolerances will reduce inflammation, if she struggles with digestion. Green vegetables like kale/Cavolo Nero and raw carrots are supposed to be good for detoxing the body of excess estrogen. “Healthwithholland” is another good account to follow around nutrition and hormone balance.
Of course most of the above isn’t official NHS advice and some people are skeptical of natural/alternative medicine and dietary approaches but when endometriosis is so badly treated and managed we don’t really have another choice than to turn to alternative means and try different supplements/approaches until there’s an improvement!
For reference I’m now 31, have had endo since I was 14 and my periods are finally only 4 days long when they used to be 12, way lighter (I would use a super tampon within 2 hours on heavy days previously and need 3 night time pads overnight, I now just use regular pads/tampons) and pain is manageable. Unless I’ve had a bad month with poor lifestyle choices I notice my following period is worse! I’m also not on any hormonal contraception anymore. Not sure if the improvement is down to lifestyle changes or something in the body that I didn’t influence but it’s worth trying and hoping for an improvement!
So sorry to read about your daughters probs. I also had a bad time of it with endo. finally diagnosed by laparoscopy when I was in my mid twenties. Unfortunately for me I didnt get on with the Danazol tablets they gave me and gave up, finally in my mid fourties I was admitted to A&E with a severe Endo. flare- up, it turned out to be in my pouch of douglas on this occasion, and was successfully treated during the laparoscopy, I was given Zoladex implants which certainly stopped the endo. in its tracks but had major side effects for me, I also know I have spots of endo. on my bowel. The things that really helped me were herbal medicines, I found a good medical herbalist and was prescribed Vitex Agnus castus along with a few others and these made me so much better, the Vitex works on the pituitory gland (its also called chaste berry) and it totally calmed down my hormones and endo. I am in late fifties now and have menopause issues, that was when I came across Wellsprings, serenity cream, a bio identical progesterone cream which works by balancing out the excess estrogen in our bodies, this may possibly help your daughter, they have a person to advise you, I use their 20:1 cream in place of HRT which I didn't get on with either. I also agree with the others advice here, especially to be demanding in you dealings with the medics. as in my experience they really couldn't be bothered if its a complicated disease like endo. to me they seemed more concerned about their own careers than about helping women patients, also I think they tend to assume that a young woman will cure herself by getting pregnant and therefore they needn't waste their time on them! Which is also wrong, I have a friend whose had two children and still had endo. afterwards. Stress most definitly makes the symptoms worse, exercise helps if possible, even just walking. Maybe she could get something prescribed to keep her calm during the exams? I used to get beta blockers not sure if doctors would do that now? Or herbal teas like camomile or Passionflower tea bags are fabulous at calming the nerves.
I hope she gets the help she needs, and bless you for caring. XX
Sorry to hear you and your daughter are going through this. I can see you’ve had a lot of advice so I don’t want to overwhelm. Just to say that I’ve just started reading ‘heal endo’ by Katie Edmonds and it’s a very empowering book about the ways you can manage endo which I have found really comforting, so it might be worth giving that a go. It also talks about how to get the most out of medical professionals.
I can’t speak for whether the strategies have helped as I haven’t yet got that far, but I am seeing a women’s health physio and that has definitely helped with my symptoms so I know that other approaches are worth exploring alongside medical interventions. Katie Edmunds also has a website you could check out first. Fingers crossed you can get Lily to a point where her symptom are more manageable soon.
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