Referral to a gastroenterologist...

[Nflanagan1]

My stomach is always very very swollen. I look like I'm going to pop a baby out! I'm not pregnant and have the mirena coil. I have also been diagnosed with endometriosis. I also cannot have sex because it is to painful. The pain is severe and leaves me screaming in pin. I have spoken to my consultant and they have said that the swelling cannot be endometriosis. I had a surgery in November 2014 to remove endometriosis. He said that he removed it, so endo can't be the issue. He refuses to do another surgery. The swelling is constant no matter what I eat or try and cut out. I also have severe pain to the point where I am bed ridden. It's in my pelvis, my lower back and the top of my legs. I have been referred to a gastroenterologist but it's just the fear of the unknown. The pain my endo brings is enough and I'm scared Of what else is wrong. My bowel movements are fine.. Any advice or knowledge on this?

I also keep getting ulcers in my mouth recently and feeling very very fatigued..

Any comments would be great.

Thankyou

[Seaside1]

Hi, I'm sorry to hear you have been having a bad time. I don't think your consultant is correct, as new endo may have grown since your last surgery or he may not have completely removed it all last time. Might be worth getting second opinion from another doctor. Bloating is definitely a side effect of endo, so I think he is wrong to say it is not the endo. Is he just a general or a specialist endo doctor? If the former, ask your GP to refer you to your nearest endo clinic for a second opinion. Good luck x

[Nflanagan1 in reply to Seaside1]

He is just a gynaecology consultant! He was very reluctant to believe me! It's endo pain I'm getting but he is telling me it's not! Thankyou for the advice!

[confusedandworried]

Hi, I'm sorry to hear of your experience.

Was your surgeon an endo specialist or a general gynaecologist? Unfortunately endo is complex and comes in different forms meaning a general gynaecologist more than likely lacks the experience to (a) recognise endo in all its forms and (b) surgically excise it (ie cut it out). General gynaecologists' interests lay in the reproductive organs but endo unfortunately can effect other areas too such us the bowel, bladder, the peritoneal lining and, although rare, even the kidneys, lungs and brain. If not excised properly and thoroughly pain may continue.

Given endo is a complex disease specialist accredited endo centres have been set up nationwide which have a specialist teams consisting of endo gynaecologists, colorectal surgeons, urologists and pain management specialists. If a person is suspected of having or have formally be diagnosed as having endo they have the right to be referred to a centre of their choice. A list of these centres can be found at the following website by clicking on the tab "Endometriosis Centres" and then "BSGE Accredited Centres":

bsge.org.uk

Unfortunately it is possible your GP and even gynaecologist has not heard of these centres - my GP hadn't until recently when I printed off the list and gave it to her! Please bear in mind most are NHS but I know of at least one that is private only (Elland Spire Hospital) so if you at some stage need to be referred to one unless you have the funds or private health insurance ensure they are an NHS accredited centre.

With regards to treatment options unfortunately there is currently no cure for endo. For reference there is research now to suggest it may be an autoimmune disease.

Hormone based treatments such as the pill, the coil, Zoladex etc, are considered initial treatment options, although in the main tend to dampen down symptoms more, though can slow endos progression also. It is sometimes worth trying these first to see if it provides you with the relief you need.

The gold standard of surgical treatment is excision surgery (ie cutting it out) as opposed to burning it off with a laser (though please bear in mind some surgeons use the laser to cut with too). Burning endo is less effective as it tends to just remove the top rather then remove it from the root meaning, much like a weed, it is more likely to grow back. However, as there is no cure even with good excision surgery endo can, though not always, grow back and it's often said this is after approx. 5 years.

Unfortunately it is really important that women reduce the number of surgeries they have in their lifetime as apart from the usual risks associated with any surgery, with abdominal surgery there is the risk of scar tissue and adhesions forming which can cause pain and other issues in themselves.

Therefore trying hormone based treatments such as the pill, the coil or zoladex early on in diagnosis is not necessarily a bad thing provided a woman's condition is monitored and symptoms managed and is not so advanced as to cause further complications (eg endometriomas on ovaries aka chocolate cysts which could rupture and spread endo and/or cause adhesions, or adhesions forming resulting in organs being stuck together). Please note I am not trying to scare you by saying this, just make you aware that these are possibilities in advanced stages of this disease so finding the right specialist early on in your diagnosis can prevent further complications later on down the line.

As endo is regarded as being oestrogen driven woman can also help themselves by following the endo diet as strictly as possible. I found that following this combined with daily exercise and reducing my stress levels where possible reduced my symptoms to a more manageable level for a good number of years before requiring treatment again. If you search the Internet or even this website you will find more information on the endo diet.

Often women with endo have to educate themselves rather than rely on their GP's or the so-called specialists. Unfortunately I know from personal experience and from reading others' posts on this forum that the myths still exist amongst the medical professions ranging from "its normal, deal with it" to "a hysterectomy cures endo" or "getting pregnant cures endo". There is a woman on this site, called Lindle, who has recently posted in detail about rectovaginal endo and its worth reading. She has also posted other interesting reads on endo.

For reference hysterectomy rarely cures endo in that endo may be on other non-reproductive parts of the body such as those I mentioned above meaning if this isn't thoroughly removed it is likely symptoms will continue to exist as the endo is still there. If you'd like to know more about this again Lindle has posted on here regarding this subject quite recently so search and you will find this.

Furthermore, pregnancy also is no guarantee of a cure either, although there are some reported cases of symptoms either reducing or being eradicated entirely during and even after pregnancy. However, in the main symptoms are merely dampened down during pregnancy only to return afterwards.

I hope this helps and doesn't scare you more. I know in the early years of my diagnosis the more I read the more hopeless and helpless I felt so I steered away from trying to learn more. I trusted the so-called professionals and took all the pills and treatment options they threw at me often knowing little about what they were doing to me. It was not until many years later I realised the importance of educating myself and actively and proactively engaging in my own treatment plan to ensure I received the best treatment available to me. I encourage as many women as I can to educate themselves on this disease as it is necessary and it can also be both liberating and empowering to do so.

I wish you all the best, x

[cupcake40]

Hi this is exactly what I am experiencing at present and have been for the last 10 weeks. I went to the GP 2 weeks ago and he ordered all sorts of blood tests and a scan. I am going for the results next week. I was diagnosed with endo 17 years ago. I have apparently come to the end of the treatment options other than a hysterectomy.