Endometriosis UK
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Missing period and pain

Dear all,

I hope you are having a good day. As I look out of my window, I see what is bright sunshine glowing against a beautiful blue sky on a chilly morning, and while I should be happy; I am not.

I have had deep endometriosis for many years and had 7 laparoscopies to date where the endo was diathermied each time. It was only in June 2015 when I was referred to an endometriosis specialist centre and had my 8th surgery that it was excised.

The surgery didn't help ease my pain; somehow it worsened! Nevertheless, I went on to have 3 rounds of zoladex injections. I stopped having them last May as I was feeling terrible side effects including joint pain, lethargy, mood swings etc. Since stopping them, I have not seen my periods return, suffice to say that I still have joint pain, mood swings and lethargy and I still have pain (you get the picture). I am worried I am going through an early menopause. Has anyone experienced the loss of a period since stopping zoladex? Just how common is this?

My gynaecologist rather arrogantly suggested that he had removed all the adhesions (he even commented that he was being arrogant about it! That surprised me somewhat), which he may indeed have but it doesn't take away from the fact that my pain is still very much present and I still have no period.

I returned to see him last week to be told that my options (once again) are few: a hysterectomy (I don't want this! And I have told him more than once), a blood test to determine what my hormones are doing and then the potential conversation for HRT if they are out of kilter (I have been for the blood test and I am just waiting now for the results) and to do what the pain management specialist (he referred me to) suggested I do: taking amitriptyline (impossible, as I am a single parent who cannot afford to be incapacitated by any medicine no matter how low the dose), use a TENS machine (fair enough, though I cannot at this time justify the purchase, but then again it doesn't answer why I am still in pain) and attend his chronic pain management programme (aimed at those people with mobility issues which I don't have)).

He (my gynaecologist) pretty much said he cannot do anything more for me. He left me with an open access appointment for 6 months and suggested that I probably shouldn't see him anymore anyway.

The pain management specialist isn't treating me for my pelvic pain but instead said he wanted to treat me 'holistically' and took issue with my back pain which I found bizarre because that was a result of a whiplash injury; the cause of a car crash 18 years ago and completely unrelated to my pelvic pain. I did ask if I followed his recommendations (listed above) and the pain still didn't pass, then what? His reply was that in 30% of cases he and his colleagues see, there is no known reason for the pain and therefore, they cannot help them. This left me extremely despondent.

I don't know what to do. I am feeling very low. As much as I have learned to hate my period as it has been the bane of my life for 30 years, I now miss not having it and feel helpless and still have pelvic pain anyway.

Thoughts? Experiences? Please do tell.

Thank you for listening...

3 Replies

Your gyno is a jerk, is there anyway you can switch doctors? Even if a doctor thinks they can't do anything they should at least try to do something.

I've never research zoladex but I have researched lupron and with lupron some ladies don't have their periods return for a year.

However I'm on northidrone and on the pamphlet it says that it can be used to bring back periods. Perhaps you can speak with your gyno about going on a progesterone pill but you can also probably ask for a pill at a medi-clinic if your gynos like this.

I've heard of hysterectomies causing more harm then good, sometimes ladies get bothered by the o-estrogen in HRT and other times it screws up their pelvic floor.

Can you switch physiotherapists? One of mine was working on my back instead of my abdomen and pelvic floor because when she checked it was fine. Then I switched and the next physiotherapist said my Fallopian tube was stuck to something and my pelvic floor was so screwed up she could only fit a pinky in. Even if they are pelivic floor physiotherapists some have a better understanding then others.

Your gyno is also wrong in the wand that he said he removed all adhesiosns, the problem is adhesions are a natural part of surgery and they almost always come back as the body heals. A physiotheprist can also do deep tissue release for this. The one problem is that deep tissue release gets bad before it gets worse, in my case my pain gets horrific for 3 days then it gets better then before. You can also use a crystal massage wand on your abdomen since it applies lighter pressure then your hands (I'll message you a link). My physiotheprist says that adhesions like to be loosened lightly because by applying too much pressure you increase tension. They also technically don't release the adhesions, it's more so releasing the ligaments of organs so their not as connected if that makes sense.

I also use physiotherpy tape that my physiotherapist has taught me how to apply and it helps with pain as well as bloating.

I find eating ginger or drinking ginger tea works wonders for my pain. I also have eliminated soy because it contains photoestrins and makes my pain bad. When you eat high estrogen foods such as meat and dairy you can also take estrogen eliminating foods to counteract the effects such as broccoli or mushrooms.

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Thank you very much. I will certainly speak to my family doctor about a second opinion and discuss women's physiotherapy again. I did see a lady who had me doing pelvic floor exercises but they didn't work for me. :( I do have stress incontinence also since I had my son which is another upset in my life. You have certainly given me something to think about.

Ginger tea and stem ginger certainly help my nausea but I hadn't thought they might help other ailments like pain. However, I do like meat and dairy products so that might be hard to remove from my diet.

I wish you well.


I like meat and dairy too so I eat foods that control estrogen intake, also fish oils do wonders

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