Will the coil help endometriosis of the Bowel?

[flutterby84]

I went to my GP with suspected endometriosis, specifically of the bowel, and she pretty much just told me to get the coil fitted without referring me for any follow up tests or conclusive diagnosis.

For many reasons, I am terrified of having the coil fitted. I have psychological trauma from childhood and early adulthood and getting a smear or an internal ultrasound are hell on earth.

I don't know if the coil with help if it is endo of the bowel, or should I be pushing for a proper diagnosis?

I have struggled with my periods since they started and can't take hormonal contraception so this feels like it is the only option left.

I would be grateful for any advice or insight anyone can offer.

[AllthatGlitters]

Hello flutterby84, yes I would personally push for an actual diagnosis. Why have the coil when you don’t even know what is wrong with you. It doesn’t make sense. I really think it depends on your doctor and what steps they decide to take. I have a female doctor who is brilliant, can you see another GP who is female?

Like you I am not keen on the coil and have refused this. There are some ladies on here who think it’s great and others who think it’s a nightmare. It’s a personal choice but I don’t want to be prodded down below anymore as it’s so painful.

Going by your name of 84, are you in your early 30s? I am 37 and find that I am being taken seriously, from what you read on here the younger that you are, you don’t seem to be taken seriously by medical professionals.

Ask to be referred to gynae, they will do internal investigations, maybe an ultrasound (which did not show up what was wrong with me), it was an MRI that diagnosed Adenomyosis but ultimately it’s a laparoscopy that diagnoses Endometriosis.

X

[luthien]

Hello

Ideally you need to ask your GP to be referred to an endo specialist so you can talk to them and they can assess your symptoms and decide the best course of treatment. Unfortunately GPs aren't always knowledgeable with regards to endo and will offer ideas for treatment being the "cure all" which are usually not anywhere near that.

If you'd like to know whether you have endo and the extent, plus where it is, how bad it is, whether it's stuck organs together, you'll need a diagnostic laparoscopy. It can only be seen visually and the lap is the only formal diagnosis method.

After that, you'll have a chat with the specialist to decide depending on your lifestyle, views, age, personal preference and severity, whether a lap to remove endo is best or a hormones. A good specialist will want to see the endo and see what it's doing / where it is, and possibly remove it to make your life better before considering hormones. However you may consider hormones (coil, implant or pills) as you may not want surgery yet, symptoms are manageable, don't want to think about it, there's lots of personal reasons. The main thing is it's your body so you do what you feel is right.

Some women have a lot of endo and very little symptoms or a very little endo and a lot of symptoms so you really don't know what's going on inside until after the lap.

Have a read of my story and perhaps it might help from a different viewpoint:

"All this effort does pay off - my story - hope it helps !"

I was pushed to have the pill and suffered for about two decades, then finally saw a specialist, and had endo on the bowel. Even though surgery is scary, it's helped my symptoms so much, there's no way I'd even consider any hormones ever again!

xx

[Starry]

A gp should definitely not be treating endo on the bowel.

The nhs treatment pathway should be for a diagnostic lap and ideally if there is bowel involvement referral directly to your nearest bsge specialist endo centre where they have advanced excision skills and multidisciplinary teams and really know what they are doing. If your endo was to be deep infiltrating rather than superficial you would end up there anyway.

bsge.org.uk/endometriosis-c...

Severe pathway is documented in this service spec google.co.uk/url?sa=t&sourc...

Mirena is definitely one option but first you really need to know what you are dealing with.

I deeply empathize. I also have childhood trauma and feared the insertion.

I did agree to try the mirena and had it put in under GA during my diagnosis lap. When i came round i was told i needed more surgery, i had a severe grade 4 large rv endo nodule growing into my bowel and adhesions distorting my bowel out of place. I was reluctant and scared of bowel surgery so tried all other options with support of my consultant.

1. Mirena stopped period but caused pelvic pain and low mood with me unfortunately. I enjoyed 5 period free months but eventually removed it as the trade off wasnt right.

2. Zoladex to stop ovaries. I had v exfreme adverse reactions and had to stop.

3. Considered and rejected oopherectomy due to longer term risks and the fact they're healthy

4. Accepted the bowel surgery was unavoidable and essential.

Obviously rather more rollercoaster ride than that.

Op. It was successful from an endo point of view and stopped the endo going through the bowel wall and me needing a bowel resection later. I did have lasting indirect complications though so i am glad i have the peace of mind of trying all else first. (ME following viral-meningitis. Just one of those things)

This was just my personal path and you may not need surgery as we are all unique and lots of ladies have milder superficial endo (symptoms of course not correlating with severity)

The mirena so very nearly worked for me, if you could have it inserted under GA it may be worth a punt given surgical risks. Its always a unique case by case matter of weighing up personal risks and benefits angainst risks of do nothimg.

My pain was i think likely due to irritation of ovarian cyst treatment I'd also had under the same op. Its the lowest risk option and removal is incredibly easy if you dont get on with it.

Anyway hope some of these ramblings give you some avenues to explore and haven't scared you. I always think knowledge is power especially in dealing with non specialist GPs.

[flutterby84]

Yes, I am early (well nearly mid) 30's.

This was a female GP but I have an appointment at the end of the month with another GP who I have seen before with regards to period and infertility issues. I will try and speak to him about it.

[Siduri]

Flutterby, the others here make so many good points that I would second. And add a few things from my own experience.

First, many doctors don't take endo seriously. It took me over 15 years to get a firm diagnosis, and that after talking about my symptoms to every gyn and GP I saw over the years. And having two generations of family history before me with endo. Only when I could not concieve after 4 years of trying did they listen and do a diagnostic lap. Maybe I am just not very convincing in my approach to doctors, or maybe it is various biases playing in, but even now, I often get the brush off with various doctors chalking it up to everything from anxiety to drug-seeking. It can be extraordinarily disheartening and even humiliating when you are experiencing symptoms and physicians seem to believe it is "in your head." Not that yours has implied that, but I've heard from so many women in another support group who have had similar experiences. Trust yourself, okay?

I have bleeding with BM during menses and none have even considered another excision to check bowel involvement. That does not mean I have given up, just that I will now only allow a surgeon who specializes in endometriosis do any further surgeries. I have learned my lesson. After cut nerves and terrible adhesions from the last lap that have left me suffering for years just from that surgery alone, I am a bit cynical about letting a regular OB/GYN address bowel involvement, no matter how much they say they are trained.

Something else, about the coil. And I do not mean to scare you at all, just something to be aware of. Many IUDs are contraindicated for women with uterine abnormalities, but in my experience many Gyns do not check (via ultrasound) the shape of your uterus beforehand. Mine happens to be bicornate (heart shaped) which means the chance of uterine perforation by an IUD is increased significantly. Not a single doctor caught that, though several have suggested Mirena for my issues. And the doctor who first suggested the coil also ordered the ultrasound which reported the shape of my uterus ! I only caught it because I was reading the "fine print" on the device and considering going that route. This was a few years back and maybe they have changed the design somehow to be safer, but I believe women and their gyns should look into this beforehand. Uterine anomalies are not THAT rare, and the woman pays for the unnecessary risks, sometimes for life.

So, admittedly, I have a negative bias against many of the "treatments" for endo, simply because I don't often think the cure is better than the disease. And have developed a bit of distrust for some doctors. That does not mean it isn't successful for many other women. Perhaps my system is just weird. I worry that too many doctors sort of brush us off with a "its just part of being a woman" type attitude. As I said, I don't want to scare you unnecessarily, but I do wish I had done more research before trying some of these treatments. I will never regret not trying Lupron, for example, and am so relieved I read up on it. Maybe had I been younger when they finally found my endo I would have gone that route, but the risk just wasn't worth the potential temporary benefit.

Just, if you take anything away from my experience, be your own strongest advocate. If you feel you are not being taken seriously, trust your gut and seek out another clinician for a second (or even third) opinion. If you are uncertain about a treatment, research, research, research. I have been very disappointed to find that doctors often become frustrated with difficult cases and may not give you the consideration you need, for whatever their reason. Endo and pelvic pain, in general, are difficult diseases to manage, so if someone brushes off your concerns, do not let that be the end of it. You only get one body.