Waiting for laperoscopy

[LUCY001]

Hi everyone

I am just wondering if anyone has had similar experiences.

I had heavy bleeding and pain during my periods, pain and bleeding during and after sex, painful bowel movements during my period. At one time I went travelling and asked if I could take my pill packets together and was told all would be fine, but I bled anyway, a very heavy very painful period. I had been to my GP multiple times, was told I had vaginismus and had cryotherapy to my cervix for the bleeding after/ during sex. I had tried multiple different pills, antispasmodic medications for pain, tranexamic acid for the bleeding and all of the ultrasounds were back as normal.

Three years ago I had the coil fitted. The first few months were hell. I had the worst pains I'd experienced. I had a scan and it was in the right place. I was taking strong antibiotics because they believed I had PID. Slowly, things got a little better. Though, the first year of the coil was extremely challenging. I was swabbed many times due to discharge. I still have the discharge now. And have had to wear a pad every single day since the coil was inserted. The pain is now much much better and the bleeding is intermittent but sooo much lighter than before the coil. I still have bad times every now and then with painful bowl movements and cramping particularly after sex. Heat and oovie are the best things.

I have been diagnosed with IBS many years ago for the painful bowel movements and bloating, as well as constipation and lose bowels at times.

After a year of the coil I paid privately to see a gynecologist. They said "you're young and expect everything to be perfect and it's not". As well as "it might be endo but you have the coil and things will get better." My heart was broken as this was an appointment I had waited a long time for.

The coil also caused me to have pain after passing urine so I had a cystoscopy which was clear. Yesterday, I had a follow up appointment with a gynecologist who said that she believes it could be endo, and I have two options, I can be put on the waiting list for a diagnostic laperoscopy or have the coil out and try to conceive (as I informed her that this was my plan moving forward). BUT I was clear that having the coil out terrifies me due to the pain and heavy bleeding. I asked her about the discharge I've experienced including what I call "floods" a clear fluid that comes from the vagina in a literal flood and pieces of tissue that come too. Sorry TMI. She believes that my body is rejecting the coil.

I opted to be put on the list which is approximately six months. I am so so so anxious that I will not get any answers and that everyone who said I am being a hypercondriac is right! But I feel I need to know. Its been twelve years of going back and forth to the GP to have been offered the option of a laperoscopy and I feel I cannot let the opportunity pass.

[MangoStickyRice]

HI Lucy,

I’m so sorry that you have been going through this for so long without a proper diagnosis. I would say go for the laparoscopy if they have offered it as long as you understand the risks. It’s the only way to 100% diagnose Endo. I would ask them to take images for you while they are looking inside. This way, in the event that they don’t find anything, you have reference images in case you need them in the future. Stay strong and don’t be afraid to really push for what you want. Only you know what you are personally going through.

[LUCY001 in reply to MangoStickyRice]

Thank you so much for replying. And that is really good advice, I will definitely ask them to take images! I have really looked into the risks and the gynecologist was very thorough going through them as well. Thank you again 💓

[Endofitall]

I’m so sorry at what you have been through. A lot of your bowel and period symptoms really resonate with me. I’ve just had my first lap with BSGE endo specialist privately (local waits 2 yrs) after being treated medically for Endo for years then symptoms awful since stopping meds to TTC and had 5 failed IVF transfers and been trying for years with no clear cause for our infertility except the endo. I was so so scared going into lap and the MRI showed a small area of adenomyosis only. I was so worried there would be nothing and I’d have put myself through all of it, spent lots of our money, for nothing - no change in symptoms or fertility. And also that fear you describe of what if they say it isn’t endo, what then. Well I’ve literally just had my lap and feel so validated as there was endo around my left ovary which is the side of my worst pain and also on my rectum. It’s been excised now. I can’t say yet if it’ll help my pain or fertility but I feel so validated and that it was all worth it to have answers and no longer be doubted by some drs.

I hope that helps you. You deserve an explanation. Remember also if it isn’t endo then you will still deserve further answers maybe via gastro/colorectal etc. sending strength and hope xx

[LUCY001]

Thank you so much for replying, it is so helpful to hear others experiences. I am sorry to hear that you had to go privately considering all of your struggles, and I now have the opportunity to have the laperoscopy on the NHS and I'm suddenly so worried! But, I will never know unless I get the lap. And you are right, if it isn't endo, then other answers may be there for me. Thank you again 💓

[Guineafowlrach]

hi Lucy, I’m probably just repeating what MangoStickyRice says here - but I wanted you to know that you’re not alone and pretty much everything you’re going through, IBS, pains, bleeding, I have also had (except that clear liquid part as I gave up on the coil after two weeks). Coil = most pain ever. I am getting so depressed that every morning after my normal bowel movements I am then sitting there with pain in that area thinking, ‘what the hell is happening to me?!’. I’ve been waiting 18 months to see a supposed brilliant Endo guy and it’s in two weeks time. Was actually hoping for a lap, as although I had a genius Endo Ultrasound that confirms it’s all over the shop, that seems to be the only way docs will believe it (go figure). Sadly he wants to do a hysteroscopy instead. That annoys me deeply as looking in there is kinda pointless in my mind but hey, he’s the one earning the big bucks, not me. We shall see. My GP just said ‘why don’t you just go back on the pill?’ Like it’ll all disappear and of course all those chemicals are great for you too. Really would rather just get a hysterectomy to be honest. Everything seems like a dead end and everything takes forever doesn’t it?? Meanwhile it’s growing inside and probably causing more issues. Good luck and keep us posted, and I’ll do the same. This website is the ONLY reason I found out it was Endo and not just something to try and ignore like most docs want to tell you. Infuriating.

[LUCY001 in reply to Guineafowlrach]

Hi Guineafowlrach,

Thank you for your reply. Honestly, what you're going through sounds horrendous! It is so sad that it takes so much fight to be heard in this journey. I can only say that I would keep fighting for what you want/ need! They might have done the training and they might be earning the money but you know your body best. I really hope that you get some more support with this soon, and yes please do keep us updated 🩷 xx