Endometriosis

[Littlemissanxietyandocd]

My doctor has started treating me for endometriosis I have painkillers but they am looking for any suggestions of other ways of easing the pain! Thanks

[Realitea]

I take amitriptyline which is good for pain but they do have side effects and not for everyone. You can only get this through the doctor. It helps a lot of people but actually, it doesn't really do much for me.
Hot baths help me and regular paracetamol.
Has the doctor suggested taking progesterone too? (Not for pain but for stopping periods)

[Realitea]

Just saw your username - I take the amitriptyline for anxiety too and it worked for that by the way!

[Littlemissanxietyandocd]

Thank you I do already have amitriptyline for problems I have with my back! I also have naproxen but that is making me feel very sick! Think I'll run a bath a day between my hot water bottle filled up get into bed

[rookiemere]

Are you going to get a laparoscopy to see how much Endo you have and where it is? Ultimately getting it removed as much as possible is a huge help.
Or if you ar not TTC ask to be put on cerazette with no breaks. I was pain free for 6 years have had a recent relapse and think its because they replaced the cerazette with a generic brand.

[welshweasel]

You really should push for a diagnosis asap, rather than mask the issues with painkillers.
It took me ages to get seen by a proper endo specialist but I then had all my endo excised and it hasn't returned 6 years later.

[Littlemissanxietyandocd]

I have not had a laproscapy as the "diagnosis" was from 2/3 years of constantly going back to the gp with the pain! I'm not TTC nor do I want to ever have children! I really want the laproscapy as a very last resort I had my appendix out last year and have an awful time with the anesthetic and recovering from the laproscapy just trying to learn coping mechanisms at present

[Emily7708]

Have you heard of the Endometriosis Diet by Carolyn Levett, I found it reduced the pain enormously.

[TinyGoldfish]

When you say an awful time with the anesthetic what do you mean? Because I don't cope well with one type of anesthetic and that part of the recovery from my first lap was really tough. But then for my subsequent laps I've had different anesthetic (and a lot of anti sickness meds) and that part of it was just 100x easier. You can discuss it with your consultant.

Also, I really recommend joining a local support group. It's a great place to get tips and information and just have a moan with people who really understand: www.endometriosis-uk.org/find-local-support-group.

[RufusG]

Questions to ask your doctor

You may think that if you become ill you just go the doctor and they give you a drug to take away the illness

What if your Endometriosis is caused by things that you eat, or don't eat ?

Here are some questions to ask your doctors about Endometriosis

• What causes it ?
  
• How will looking at it and scraping it help me get better ?
  
• Could my illness be caused by things that I eat, or don't eat ?
  
• What can I change about my diet and lifestyle to help my body repair itself ?
  
  These are easy questions to ask, but very difficult for doctors to answer as they know very little about Nutrition.
  It may be worth asking them to refer you to a Dietitian or a Nutritional Therapist, as they specialise in Nutrition.
  If your doctor won't do this, try a search for BANT and interview 10 local Nutritional Therapists who have had success advising about Endometriosis before choosing which one to work with
  
  Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis
  
  *Increase your Vitamin D
  *Increase your Omega-3
  *Reduce your Omega-6
  
  Here are some relevant references that may be useful to you:
  Vitamin D Wiki
  Optimise Omega-6/3 Ratio
  How much Omega-3 ?
  15 Omega-3 Foods
  What to Do About Inflammation ?
  Expert Omega-3
  
  Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up
  Which foods make your Endometriosis worse and which help ?
  .

[AttilaTheMeerkat]

Painkillers are really a short term solution and will become less effective in the long run. What you really need is a referral to a gynaecologist. Also endo if it is indeed present is well outside a GPs general remit.

You have not had a lap operation and endo is usually diagnosed through keyhole surgery like a lap op.

[Mabelface]

I have endometriosis. Mine was diagnosed 14 years ago and I had a laparoscopy, hysteroscopy, D&C and Mirena coil fitted. I've been pain and period free ever since. Am on my 3rd Mirena now. When my pain was really bad, and this may be contraversial, I used to indulge in a "special" cigarette, shall we say. This stopped the spasms of pain massively and worked better than the drugs I was given by the doctor.

[welshweasel]

There is no evidence at all that diet plays a role in endo. The gold standard treatment is excision and in the right hands this can 'cure' the disease. TTC has nothing to do with it (although if you were TTC there is good evidence that having excision surgery improves chances of pregnancy and reduces miscarriage). I was pretty much back to normal and at work a week after my excision surgery. It has changed my life. I no longer spend days drugged up on opiates or suffering from the side effects of the many hormonal treatments I have tried.

[rookiemere]

I tried following the Endo diet and it had no noticeable impact on the severity of my symptoms. But I do believe it helps some people so worth a try I suppose.

[Littlemissanxietyandocd]

Thanks all had an absolutly awful day with it today ending up in tears far too many times at work which is always fun! Does anyone else struggle with work? I am very male dominated environment being one of only two girls in a team of 10 and I can see my team leader thinking I'm being a drama queen when I am gasping at the chaps and having to go for walks and get my hot water bottle

[rookiemere]

Sorry you have had a bad day. It's a horrible condition and I really relate to not wanting to talk about it to a male boss- happened to me as well.

I had a relapse recently and I made a real point of telling everyone what it was ( I may have said it was a ruptured ovarian cyst as that sounds more dramatic) as its bad enough being in severe pain without being ashamed of it as well.

Honestly give cerazette a go without any breaks. It should stop your periods within a few months and until this recent episode ( which I am hoping was caused by them trying to change me to a cheaper generic brand called cerelle) I was pain free for 6 years.

[MountainDweller]

If you don't want children, I would push for an appointment at a specialist clinic with a view to excision surgery to remove the endo, followed by long-term gnrh treatment. I'm much better for all that. Heat always helped me, I had burns on my stomach for years from the heat pads! I take lyrica oxycodone and anti-inflamatories for the pain, but in much lower doses since excision surgery and gnrh. My first op was a laser one and a complete waste of time.

[Littlemissanxietyandocd]

I had to go back to the doctors in Friday as the pain got too much they game me prolonged release tramadol which has really helped I don't have that horrible feeling of the painkillers wearing off! They are trying to speed up my hospital appointment so fingers crossed get that through soon

Thanks all

[Onlygirljen]

I had a lap 5 years ago for severe stage 4 endo (bowel was fused to womb) which allowed me to conceive, but the endo came back after having ds. Since then I've followed the diet mentioned above as much as I can, plus serrapeptase supplements (an enzyme which assists in healing scar tissue and inflammation). It's worked wonders for me, can get through my period with only ibuprofen for a few days now, which would have been unheard of before.
Best of luck!

[yohoohoo]

I can not believe your gp hasnt referred you...this shows there lack of understanding of endo. I was referred to a general gyno who again didnt have the knowledge. I researched for my own specialist in my local area found out when his days were and rang his secretary was advised to get my gp to fax over the referal which gp did. My first appt was a chat then sent for a scan then back to him to chat yhrough what he could see all within 2 hours on the nhs aswell!!! Just talking to someone who knew exactly what they were talking about was wonderful...it was a relief . So this is where I suggest you start. You will def need a lap how any gp can perscribe without having a look whats going on inside is ridiculous