New to endometriosis

[Jh14]

Hi, I’m about 5 weeks post op now... was diagnosed with endometriosis haven’t been told much other than it was advanced and a lot of it. Awaiting my post op next week. I was wondering what everyone did once diagnosed? In terms of treatment or anything that helped with pain etc?

Feel very iscolated and ‘left to it’ a lot is wizzing around my head at the moment and just trying to understand it and find my feet. The doctors haven’t been much help and it’s scarey not knowing what to do now and what happens next really...

Any advice would be much appreciated 😊

[Hidden]

Hello JH14

I am sorry to hear that the doctors have not been supportive, during this very scary and stressful time. Do you have family / friends to help support you at this time?

I have had painful periods ever since they began. It took until the age of 28 before I managed to get a doctor to refer me to a gynecologist, despite endo running in the family. A lot of the time you are left to "get one with it", which is so frustrating.

If it helps, this is what I did......

Vitamin B complex:

The B vitamins are particularly important for endometriosis sufferers for a number of reasons. First and foremost, they are needed by the liver to convert excess oestrogen into weaker and less dangerous forms. One of the B vitamins, B6, has been shown to significantly reduce the intensity and duration of period pains, which will help many sufferers.

Vitamin E:

This is an important vitamin in endometriosis because it has been shown to relieve menstrual cramps in 70 percent of women within two menstrual cycles.

**Do take this during your actual period as it increases he blood flow**

Vitamin C:

Vitamin C is one of the most important vitamins for immune function, and it is crucial that your immune system is operating at optimum level so that your body can recognise and destroy endometrial patches as they occur.

Magnesium:

Magnesium acts as a muscle relaxant and has been shown to have a beneficial effect on painful periods and lower back pain so it is worth taking as a supplement.

Zinc:

Zinc deficiency has been associated with increased inflammation, which might be another association between zinc and endometriosis since endometriosis is related to inflammatory response.

I would also recommend going to Boots for heating pads which attach to clothes, they can provide a good deal of heat and help when out and about.

Amazon also do some oaty microwavable bags for period pain and, some good priced TENS machines. I have both of these.

I would also recommend getting some organic Oolong Tea as this has

anti-inflammatory properties.

It is suggested that people with endo eliminate or at east cut back on red meat, caffeine, alcohol, processed foods and increase intake of Omega-3 Fats, eat plenty of fruits and vegetables and try following the Mediterranean diet.

Endometriosis UK has some good advice / fact-sheets:

endometriosis-uk.org/

I hope this helps a little and, I have not bombarded you with too much information.

CatPaws🐾

P.s. some people have mentioned enzymes such as Wobenzym N and

Serrapeptase.

[JulesUK]

I know it’s hard but try to take control. I kind of let things happen for too long and was messed about so much with doctors not taking it/me seriously and general incompetence (too much to mention!) but it’s your body and you’re the one living with it and you’re one of thousands of patients to a doctor. Write down your questions and make sure you ask them and if you aren’t happy change the doctor until you find someone understanding and knowledgable. Did they suggest treatment to you? I’ve had both Zoladex and now the mirena coil (the mirena has been great for me). Also this site is full of useful advice and information and also a good place to let off steam when needed. x

[Mermaid-Galaxy88 in reply to JulesUK]

Hello, I had my first lap done yesterday and diagnosed with endo on both ovaries and womb..I am very sore..But I seen that you had the Mirena Coil fitted and said it was good! I was offered one and a lil skeptical as I hadn't hurt much good about it..My doc told me it was good for women with endo..So I said I would give it ago..I know I'm only one day In..But I really hope it works for me as it has for you x

[GrittyReads]

Was it just an exploratory lap, or did they remove any endo?

Also, are you in the UK, or elsewhere, as the process can be very different?

In the UK it is often the case that it takes a long time to get anything done.

However, if you were lucky - and had a sympathetic and aware/up-to-date/knowledgeable GP, it would be normal to have an exploratory / diagnostic lap, first.

If the Endo is advanced, or in 'difficult-to-access' parts of the entire uterus region, or if there were particular types of more difficult endo tissue, then it is supposed to be the protocol for the initial gynae team not to remove the Endo. They may 'stage' the Endo (ie: 1-4) and the more difficult types, eg stages 3, 4, should not be dealt with other than in Specialist BSGE Endo Clinics … and the initial team should tell your GP to refer you to an 'Endo Clinic' /BSGE clinics. These are often situated in local hospitals, but should not be confused with the general gynae areas of hospitals, where less specialist gynaecologists may do exploratory laps, and also remove some of the simpler endo.

Your GP has a special 'Endo protocol' that he is supposed to follow, and if you are found to have stage 3-4, or any specific difficulties associated with your endo, then you should be referred to a BSGE Clinic.

You can read about this on the 'Endo UK' site - link at top of page - or there may be an 'Endo Support Group', near where you live (info also on the 'Endo Uk' site), I'm in Devon and there is one that meets in Totnes.

If you are not in the UK, I don't know what the usual process/progress is, for endo sufferers: maybe someone else can give more specific guidance if you say (in another post) vaguely where you are.

I hope this helps. Sorry if this may seem a bit bleak, but things have not generally been good for woman with Endo, and sadly, it seems as if things - which were improving - have slowed down again in the current economic climate, where the NHS is increasingly being starved of cash, resources and staff.

Take care, Gritty.