Waiting on laparoscopy

[40andfragile]

Hi I'm new to this forum and new to the discovery of endometriosis. My story goes like this (sorry it's quite long).

I have always had painful periods from I first took my period at 12 years old. I would have bad cramping and pain in my lower back and down my legs while at school I would regularly take days off when it was that time of month. I even remember going to my family GP when I was 15 and being so understanding as he was told me that the pain would subside once I had children! I plodded along taking pain killers and battling severe moods on various birth control pills and none of them really helping period pain. After the birth of my 1st child at 28 my periods became heavier I went on the pill again but the side effects were horrendous my periods were lighter but the moods were awful and my memory was woeful so much so I forgot to take the pill and fell pregnant with my 2nd child. He was born by elective c section I had suffered a 3rd degree tear after 1st child and as it was only 2 years since her birth I couldn't take the risk of tearing again. I didn't want to go back on the pill a's my moods were so bad so I got the merina coil put in. Initially I thought it was great minimal bleeding with very little pain but after 6 months it became unbearable. I was bleeding every day, granted it wasn't heavy, so my husband and I made the decision for him to get a vasectomy. When I was getting the coil removed the doctor remarked how retroverted my uterus was and had quiet a struggle to get the coil out.

Since the removal of this and not being on any birth control for almost 10 years now my periods are getting more painful month on month, I have been having horrendous pain towards my bowel and sides when ovulating even walking hurts when I'm like this. Period pain is in back and down my right side predominantly. Sex is extremely painful during ovuLatin and uncomfortable at all other times. I was admitted to hospital a few months back with suspected appendicitis but turned out I had a large functional cyst on my right ovary which blead into itself. I've been back to gyne 2 times since this but all scan are showing nothing more than functional cysts. I am scheduled for a laparoscopy towards the end of the month to see what is causing the pain. I have been telling the doctors all along that my period pain is normal now I'm questioning what is normal. I don't miss work because of it I just take loads of painkillers that sometimes don't work. I am so exhausted every month and for 3 weeks out of 4 I am awful to live with I know myself when the mist has descended I just want to be alone and have no one talk to me.

I've read up on endo and some of the things I can related to but others not so much so. I'm wondering does anyone else have a similar history and if so what was the outcome. Many thanks.

[Pettal76]

Your story is almost identical to mine! Started my periods at 11 always needed days off school because of severe period pains. I was on and off the pill all my life and like you had severe mood swings. Then I had my first child at 28. My periods were always irregular. I suffered from severe abdominal pain periodically and had several admissions to hospital to be told I had IBS. After my 3rd child I went on cerazette which was fantastic, however after a year I started suffering from extremely painful breast, and they were very heavy and lumpy. As a result my GP told me to stop taking it. That was 2 years ago. Since then for the first time ever I have had regular periods and as a result recognised this old familiar "IBS" pain that returned every 4 weeks on the dot, during the time of ovulation. It's totally debilitating. It's starts off low level then gets worse and worse to the point I can't stand up straight. I had a mirena coil put in 6 months ago which has stopped my periods but the pain is still awful. I'm waiting on some scan results and I'm booked for a laparoscopy. I would love to know what the results of your lap are so please keep us up to date. The only pain killer I found that helps is paramol. It has dyhydrocodeine and paracetamol in it so you can only take it 3 days max but does help. Good luck x

[40andfragile in reply to Pettal76]

Pettal76 it's reassuring to know that there are others out there in the same situation. I'll keep you posted re laparoscopy. I must try the paramol. Good luck x

[40andfragile in reply to Pettal76]

His pettal76. I've had my lap and all clear. No endo and ovaries are healthy. My surgeon did say that she tucked my right ovary up in??!?!!!?!??! Was a bit zonked out from anesthetics so didn't think of questions to ask? I don't understand what she meant by that or what exactly she did. I've been back at my own GP since and she still hasn't received the report from gyne so I'm none the wiser.

[Hidden in reply to 40andfragile]

Hi, was this done by a gyne or a BSGE specialist? I understand that if you have Rectovaginal (RV) endo, it is easily missed by a surgeon who hasn't been trained in endo excision and doesn't know that adhesions can create an obliterated Pouch of Douglas and hide extensive endo. RV endo symptoms can be similar to IBS as the endo affects bowels and rectum.

Hope your are a bit better now and you have found your answer 💪

[Uma17]

I also used to have terrible ovulation pains before I was diagnosed (10 years ago, I am now 51 and no children) rather than period pains. My GP kept implying I had IBS despite me telling him that I could feel my ovaries during those painful times and like you had difficulties walking. He referred me to a private gynaecologist (I had health insurance at work) who said straight away that I had endometriosis from what I was describing. The scan revealed endometrioma on each ovary but that's it as endometriosis does not show on scans. My understanding is that endometriomas are a sign of endometriosis so having them is a sure sign. I had laparoscopy, told it was severe and was fine for about 6 years. I didn't follow any treatment apart from acupuncture.

3-4 years ago I started having bad abdominal pain, particularly in the upper part. I found it quite difficult to manage as I get attack for 1-2 hours that stop as suddenly as they came and that a few times a day. I assumed it was due to the endometriosis but was not necessarily relating to my cycle. Anyway, I just had a hysterectomy and laparoscopy and they found endometriosis very close to my liver and diaphragm. They couldn't remove it all but at least I know what it is and not indigestion or IBS so I'm feeling more at peace with it. They also removed a fibroid that causes my heavy periods.

So endometriosis causes all sorts of symptoms. From what you say, you don't seem to have had sympathetic doctors and that in my opinion is the hardest thing to bear. Does your consultant specialise in endo? Is he or she sympathetic?

I would personally recommend that you eat well and as healthily as you can taking extra care during the times when it is painful. For me constipation would make things far worse, I've started eating lots more fruit, I avoid getting too full. You don't need to get restrictive as enjoying food is very important but experiment how you feel. Keeping a diary is helpful. Try not to isolate yourself too much and have fun with your friends and family. One day at a time and be kind to yourself.

Hopefully the laparoscopy will give you a clear diagnosis and remove the endometriosis that is causing you pain and that you will find a way to manage it well afterwards.

Good luck!

[40andfragile in reply to Uma17]

Uma17 thanks for your reply and helpful tips.x