Advice on recent Endomitriosis diagnosis

[Daisy54]

Hello Everyone

I’m after some much needed advice & help regarding endometriosis. I would be most grateful if anyone might be able to help me with some questions I desperately need answering. I apologize if my thread is a bit long winded!

A brief summary about me. In January 2017 a consultant that I was under asked me to come off the combination contraceptive pill Yasmin that I had been taking for 18 years. I had been very ill since September 2011 with various different symptoms going on – abdominal cramping/stabbing pains, episodes of pelvic pain, stomach bloating, nausea, diarrhea, all over joint/muscle pain (but especially in my hips, ribs & lower back), severe fatigue, headaches, skin rashes, dry eyes, hot flushing, raynaud’s disease, B12, Zinc & vitamin D deficiency . The consultant felt that Yasmin might have been causing me some of these problems & said that this pill had a different form of synthetic progesterone in it compared to the old school pills. He said that he strongly considered it as a none user friendly pill. I apprehensively decided to come off it to see what happened.

Before coming off the pill I had been diagnosed with fibromyalgia, raynauds disease, mild joint hypermobility, 0 negative Sjogrens syndrome & small intestinal bacterial overgrowth but not any endometriosis yet.

Anyway after about 5 months of coming off the pill my pelvic pain, abdominal cramping/stabbing pains, bloating, hips, ribs & lower back pain & diarrhea become severe. I also started suffering from very bad diffuse hair loss all over & to date have lost a lot of hair. Unfortunately I was having serious amounts of sickness from my job & am no longer able to work due to how bad these symptoms are affecting me. Since January this year my symptoms have got even worse. I’m pretty much bed bound most months, 6 days at the end of each monthly cycle & then for the first 6 days into my new cycle it continues i.e. pelvic pain, abdominal cramping/stabbing pains, bloating, hips, ribs & lower back pain , heavy periods & diarrhea. Then the rest of the month I endure the other symptoms, but still have these symptoms come & go during the month as well eg.can have bad episodes around mid-cycle to.

In September 2018 I had a laparoscopy. This was performed by a Consultant Obstetrician & Gynaecologist, but not by an endometriosis specialist or at an accredited center. My uterus was found to be normal & both my ovaries were normal. I had adhesions within the left tube and the uterus which had been divided & minimal endometriosis was ablated. The consultant informed me that she identified severe peri-hepatic adhesions, also omental and bowel adhesions at the level of the liver, but said that these adhesions didn’t look like endometriosis at the time. She recommended to my GP that I might need to have Adhesiolysis surgery to remove them by a Colorectal Surgeon. She told me that I had minimal endometriosis & this wasn’t anything to be concerned over. She recommended the mirena coil & discharged me.

The Questions I have are:

• I’m currently not on any hormonal suppressant, so my first question is can anyone recommend the best one to have for endometriosis? Is it better for me to be on a progesterone only pill or the combination pill? Can someone tell me a good one to try & how it helped you?

• After being told that I had adhesions I did a lot of reading on them & endometriosis seems to keep coming up as a major culprit for them. However I’m reading that there are other conditions to that can cause them – i.e. crohns disease, pelvic inflammatory disease, trauma to the body etc.

Can anyone tell me if they have endometriosis but also severe adhesions to? If so did you have adhesiolysis surgery to remove them? Also how do you cope with the pain from them?

• My consultant who did my laparoscopy was very blasé about where she looked for the endometriosis. She told me what I have said above. As mentioned I’m having terrible bowel problems but also bad pain in my rips, hips & lower back. I would like to know how a consultant can diagnose endometriosis in your hips, back or rectum?? The consultant told me that I had a little endometriosis in my pouch of Douglas?, but then in my clinical letter to my GP this wasn’t even mentioned.

I’m strongly worried that I may not have been investigated thoroughly by the consultant when she did my laparoscopy & feel that I could possibly have endometriosis in other places of my body.

• I would like to get a second opinion from an endometriosis specialist this time & possibly even have another laparoscopy to make sure that I was looked at thoroughly. I live in East Kent, so any endometriosis specialist centres/consultants that are based in Kent or London would be ideal for me. However if I need to travel to see the best person possible, then I will do this. If anyone knows of a centre or consultant that practices on the NHS then that would be great news to. .

However I just want to get to the bottom of things & see the best person possible. If I have to go private to do this, then I’m happy to do this.

I would be most grateful if anyone could recommended some names/centres to me & answer any of the questions I have asked about.

Thank you to anyone who takes the time to read my post. I would be most grateful for any help with all of this.

Kind Regards Abbe xx

[kalecolbe12]

You may pelvic floor dysfunction..,everything you mentioned sounds like interstitial cystitis or just pelvic floor dysfunction which encompasses all of it.... Please go to the interstitial cystitis website and look at the posts there and you'll see so much similarity.... also pelvic floor dysfunction which is what I have I went to two urogynecologist one gynecologist and one urologist and I had two procedures before I was sent to a pelvic floor physical therapist who is helping me.... I am also in a muscle relaxer which helps enormously....if I were you I would be looking for a pelvic floor physical therapist because they know about all of these the issues and will help you.....there are quite a number of them in the UK,especially around London....just Google it...I feel it's the best place to start and take all your med records if you can...tell your consultant you want to be referred to one

[Daisy54]

Thank you for your responses to my post. I will have a good read about this. Kind Regards Abbe x

[jenchambers]

Hi Daisy sorry to hear you’re suffering. Have you had any other surgery?

[Daisy54]

Thank you for your response. I haven't had any other surgery before. The consultant who did my laparoscopy was baffled by the adhesions that she saw, but didn't give me a reason as to why they are there. She said that I may have had a severe infection at some point & recommended that I have adhesiolysis surgery to divide them. I have seen one consultant privately regarding adhesion surgery. He told me that the pain I was feeling was inflammatory arthritis & this was in my ribs, hips etc. Personally I don't feel that this is what I have going on & felt that he just labelled me with this instead. I have read that adhesiolysis surgery isn't an operation that consultants like to perform, due to there being a chance that the adhesions will grow back again. Kind Regards Abbe x