I'm new here

Hello, My name is Sarah Murphy I am 18 years of age and just recently got married. I found out I had endometriosis in April of this year and had no clue what it was. I have always had heavy periods and sharp vaginal pains but I always thought I was normal until I started having intercore and I knew it easnt normal for someone to be in that much pain. So I went to my gynecologist and he advised me to get the surgery to see if I truly have it. My surgery was a month later in May and I had a mild case of it. My gynecologist could only remove one (the biggest) due to the fact that if he was to burn them all it would decrease my chances of ever having children. Before my surgery I was a birth control pill called Junel, he told me to stop taking it because it is part of the reason my endometriosis was growing. He suggested I take the depo shot to low it but I'm not too sure about how I feel about it. Most people tell me it makes you gain wait like crazy but everyone is different.. I just want to know if there are anything out there that I can try to lower it because intercourse is a big part of life and I am still feeling just as much pain as before. I just joined tonight because I am having very sharp vaginal pains and my left lower stomach. I wasn't sure if it was from my endo or if it could be something different. Please leave all of your suggestions!

Thank you!

[confusedandworried]

Hi, Firstly let me say I am so sorry you are going through this and at such a young age.

Secondly it is crucial you get the right treatment and information about endo so that you can play an active role in your treatment plan.

Unfortunately I know through personal experience that the myths around endo still exist amongst some medical professionals and as such amongst some sufferers also who, understandably, perpetuate the myths regurgitated by the medical professionals involved in their care.

For example some sufferers are told and believe that hysterectomy and/or pregnancy "cures" endo. Sadly this often is not the case and any medical professional telling you otherwise is wrong. There is plenty of well documented research available to read in published medical journals (including online) to support the fact that hysterectomy and pregnancy are neither "cures" or valid/necessary treatment options.

Hysterectomy is actually only removing the uterus and sometimes the cervix, not the ovaries. Removal of the ovaries is called a oophorectomy and removal of the Fallopian tubes is called a Salipingectomy. Removal of any of the reproductive organs doesn't take into account endo that may be, and usually is, elsewhere such as the bowel, bladder, peritoneum etc. So unless ALL endo is thoroughly removed from ALL areas effected then symptoms are likely to continue.

Pregnancy sometimes, for a few women, results in symptoms reducing or diminishing altogether. However more often than not at best all it does it dampen down the symptoms whilst the woman is not experiencing periods only for symptoms to return later. Sadly for some even pregnancy provides no respite.

Now with regards to your gynaecologist suggesting a chemically induced menopause I am really sorry to hear this particularly as ESHRE European guidelines advises against anyone under the age of 23 to be on such medication. The reason being is that such medication can effect bone density and this is even more pertinent before the age of 23 because your bone density is still forming and is yet to reach its peak.

Furthermore hormonal based treatments don't treat the disease itself. It rarely "shrinks" it and if it does it is minimal and it doesn't eradicate it. Instead all it tends to do at best is dampen symptoms whilst on such medication only for symptoms to return when the medication is inevitably stopped. For some it doesn't even do that.

If you live in the UK are you being seen by a BSGE accredited endo specialist? Endo is a very complex and, as mentioned earlier, doesn't tend to "just" effect the reproductive organs which is where general gynaecologists interests predominantly lie. An endo specialist is more likely to a) be able to recognise endo in its many different forms and b) have the skill and expertise required to thoroughly excise it (ie cut it out). Burning endo, particularly more deeply infiltrating endo, is less effective as it merely removes the top. It doesn't remove it from the root meaning, much like a weed, it tends to grow back. So this may be why you are continuing to experience symptoms. Research shows that thorough excision surgery increases the likelihood of either endo not returning or symptoms reducing in 56-66% of cases. Thorough excision surgeon by a skilled endo surgeon can also help improve fertility.

You can find a list of BSGE accredited endo centres at the following website: bsge.org.uk.

Unfortunately not all endo centres are equal, some are better than others so it pays to ask around for recommendations. Whilst you are not able to openly discuss individual centres or specialists on this forum you can through PM. Alternatively if you haven't done so already join a group on Facebook called Endometropolis where you can openly discuss such things and request recommendations. You can then request a referral via your GP to any one of the nationwide centres on the list, although I know of at least one that only sees private patients now (Elland Spire).

If you are not in the UK Endometropolis is also a good place to look for recommendations of surgeons in other countries.

It is very important to have access to the best surgeon available to you as this can reduce the number of surgeries needed. Unfortunately with each surgery comes the risk of adhesions and scar tissue forming which in turn can cause pain and other issues in themselves. This is why it is so important to choose the right surgeon.

Finally it sadly is critical that women with endo do everything to educate themselves on this horrid disease as unfortunately there is still a lot of inaccurate and misguided information out there. You can't necessarily rely on your GP or gynaecologist to provide you with the facts. One good reliable source of information on endo can be found on a website called Endopedia so this may be good place to start if you haven't visit this website already.

I hope this helps and I wish you all the best, Jo.

[sar71]

Hi I'm 24 and have had endo since I was 10 had first operation at 16 had one more at 18 currently waiting to have a third one they are very hesitant to do it but I think its the only answer as endo is a vicious circle I find you get the operation might be lucky enough to get two years out of it and back in same place you began. I've missed the last few months of leaving cert in 2010 due to it , all my transition year in 2008 and just recently had to give up work over it but I blame my gyne for that as she's very slow to operate and has had me on every medication possible so far. I just finished the injection I started it in september 2014 and was taken off it in May as it was affecting my liver something they don't tell you can happen I didn't gain weight I lost weight on it but I totally understand your concern I was so against doing it but they would not help me anymore of I didn't try it. To be honest the worst parts were only the hot flushes and the liver thing it was not as bad as I have thought it would be but as you said everyone is different. I work in childcare and I do want kids in the future and I'm guessing you will too I was told injection can help with that aswel as endo reduces your chances and each operation the scarring reduces your chances.

No one can make you take the injection you are your own person but is would talk to your doctor about maybe getting the monthly dose of the injection rather than the 3 or 6 month dose as if you find you don't like it at least you can stop it then and can say you tried it. I hope you feel better soon 😊

[jessoxo]

i tried the depo injection and sadly it didn't work for me but it has worked for others. the big question is would u rather suffer with your pain and symptoms or try something that might help this and possibly gain a few extra pounds.