Looking for Advice and Venting a Bit

[Aksunkist]

Hi everyone,

I will put a TMI warning here, but I really need to vent this out somewhere. I also hope that maybe someone might be able to offer advice or suggestions. I have been dealing with increasingly worsening pelvic pain for the past two years. I have always had horrible periods, ovulation, and migraines, but a little over two years ago I was going thru a very stressful internship and ended up having a large amount of blood in my urine. Thus starts my adventure into despair without a seeming end to it.

I went to my PCP and he ran the usual tests, everything turned up normal and no blood was present in my urinalysis. I was referred to my GYN. My GYN referred me out to a Uro-GYN and she checked my bladder for IC. My bladder was healthy and endometriosis was suspected. After he telling me that I would just have to live with it and get hormone injections I asked if we could check to make sure and remove any adhesions that were found in order to reduce the pain I was feeling.

*A note on the pain: it is an almost constant burning, with pressure and intermittent cramping and stabbing. It radiates to low back and down my leg. My joints ache and are stiff. I suffer from allergies and GERD. I have Migraines multiple times a week and one of my main triggers is hormone flux.

She reluctantly did a laparoscopy and found nothing. I asked if I could try the mini pill before injections as I am sensitive to hormones and she said they did not exist. I then returned and received my mini pills from my regular GYN. The mini pills helped and I did not have periods for a year (a blessing as my periods are AWFUL, severe bleeding and cramping that leave me toilet or bed ridden with 24/7 heat pad use for 7 - 10 days). Unfortunately, after a year my periods returned and I started spotting. Periods every 3 to 6 weeks, periods lasting 3 days or a month long. I was being checked for anemia but hemoglobin was always in the middle range.

I've been checked from RA, I've seen an Endocrinologist who has checked me for a wide variety of hormone related issues. Everything always turns up fine. My GYN said that I had her blessing if I decided to get a hysterectomy and referred me to the specialist at her clinic. Unfortunately he has seemed to brush me off as having IBS with there being no cure and I just have to live with it. I do not have symptoms consistent with IBS, I get diarrhea/constipation when I have hormone flux and diarrhea associated with my migraines. The pressure I have has never resulted in excess gas. BM and urination have never relieved symptoms, but often have the opposite effect. Some foods do upset my stomach, but I have GERD and allergies. Since cutting out gluten 7 months ago the pain I used to have in my stomach (above and around belly button) is gone, the only pelvic pain is much lower.

I am severely depressed and frustrated that no one is listening to me or thinks that I am lying. My family sympathizes, but I can tell they are starting to have doubts that this pain is real and that it is all in my head.

I am seeing a Pain Management Doctor and they are recommending Injections. The pain pills I am on help, but I think they might be making my depression worse. I am taking Norco 7.5/325 3x a day (I cannot take NSAIDs as they cause severe abdominal pain, the max I can take is 250 in an Excedrin for my migraines).

I see the curmudgeon GYN in two weeks to let him know how the increased norethindrone is working (I am no longer bleeding or spotting, but pain level is still the same and I have even worse daily headaches and have developed leg cramps).

I see my Pain Management Dr two days after the previous appointment. At which time they will want to try injections. I am very terrified of getting injections as I am fairly sensitive to medications and when I had the laparoscopy I found the resulting nausea to be worse than the pain.

Thank you for taking the time to read this. If anyone has additional questions about symptoms or history please ask.

Aksunkist

[Konagirl60]

I really feel for you. I to had terrible periods with pain but never lasting as long as yours do. Menopause is great!

Ask to see another gynaecologist. No patient should be brushed off. If you do choose to have a hysterectomy, just make sure they leave your ovaries alone. You will have an automatic menopause if you do not keep them inside of you.

Have you had any physio therapy? The burning pain makes me feel it could be your sciatic nerve. Does being active and/ or driving in the car make the pain worse? Does your leg or foot ever get numb?

What injections does the Pain doctor hope to do? Do you know what will be injected? Are they proposing a nerve block ?

I believe you! Do not give up!

[Aksunkist in reply to Konagirl60]

Thank you for your support and encouragement.

My GP has said that if need be he will refer me to a clinic in the lower 48 that deals in unicorns as he calls it. Basically, cases that are in the rarer category. I am just so tired of everything moving so slowly. I am fairly positive that I have adenomyosis and maybe endometrial adhesions in my bowel. I feel like I have been at war with my uterus since the beginning (and you are correct, I would want to keep my ovaries when having a hysterectomy).

I feel like ever since I started menstruating that I haven't been able to really live a life. I've finally been able to find a career that I can be successful at and enjoy but once again my body decides to cause problems. I am 37 so I have been dealing with health related issues since I was 13 (and possibly earlier if my vanishing stomach aches in elementary school were actually abdominal migraines).

I did have physiotherapy for sciatic nerve pain and that did help with the nerve pain but not with the pelvic cramping. It flairs from time to time, but is a different type of burning.

I used to do bicycle, Pound workout, and swimming, but aerobic activity makes it worse. Sometimes it seems like it has made the pain subside but it always comes back with a vengence.

I have trouble tolerating physical examinations from GYN as they result in bleeding/cramping sometimes lasting up to a week after. Sexual activity has always been a no, along with masturbation as both result in severe cramping (this is compounded by the chronic cramping already present). Sadly, my uterus can even be set off by a random uncontrollable erotic dream :/

Yes, nerve blocks and they mentioned anesthesia of a sort being in them. There are a few areas in the pelvic region. They compared it to an epidural.

[Konagirl60 in reply to Aksunkist]

Just wondering? What method of birth control do you use?

I know nothing about adenomyosis.

Perhaps you need to try an anti- prostaglandin ? Uterine cramps are often cause by it. I used Ponstan for years and it was effective.

I sure hope your injection is effective.

[Aksunkist in reply to Konagirl60]

I am currently on 2.5mg of norethindrone, a bcp with no estrogen as I am sensitive to estrogen. I have never heard of ponstan. I will ask if I can try it. My current bcp is a high dose and although it has stopped most bleeding; it is causing leg cramps, bloating and headaches.

[Konagirl60]

Unfortunately, side effects are real and must be considered when using any medication long term.

In my case Ponstan helped with uterine cramps. I do not know if it will help stop heavy menstrual bleeding? You really are lucky that you do not have anemia.

Good luck. We are forced in today’s world to be our own advocate. Keep me posted. Wishing you luck with treatments.

[Aksunkist in reply to Konagirl60]

I am actually quite baffled as to how my hemoglobin is always 12 and above given how I do not eat much meat or particularly iron rich foods, but they run tests for anemia every few months.

Thank you. It helps just knowing that I have people in my corner. I will let you know how the injections go. I am terrified to get them, but at this point I am desperate.

[Konagirl60]

I know that desperate feeling. Just make sure you know exactly what they are injecting into you. I had a pain specialist who did my nerve blocks the way you do when a woman is delivering a baby....in the supine position. The first block she injected the inside wall of my upper right vagina with anaesthetic ( and no steroid.....a failed block ) and the second time she injected the lip of my right labia with only anaesthetic ( an no steroid ). I got no relief and they did nothing to help diagnose my pudendal nerve compression injury. She was incompetent.

Make sure they do not inject Botox...into muscle. My Minneapolis specialist said it was not good for muscle. You can read about this on the Net.

Keep on pain warrior. Hugs. Could you pay a Naturopath to repeat your CBC? I have found that doctors can misrepresent patients. Another opinion on your hemoglobin would be wise.

[bnehello]

What about Adenomyosis, have you had a MRI or pelvic ultrasound to check for that?

[costagran]

try to find out how your uterus is positioned.

[Lipsyl]

Hi, sorry to hear about your awful situation, it sounds like living hell hun. I had very heavy periods with severe bleeding and cramping. I was intent on getting a hysterectomy but my gyn suggested that I tried a new treatment which was more or less in its infancy 25 years ago! I had a transcervical endometrial ablation which is basically a procedure which removes the lining of the womb and hence stops the build up of the lining thus stopping the bleeding. It was 100% successful for me. I think things may have moved since my procedure but I know that there is definitely an option for this in the UK. Providing you don't wish to have anymore children this could be an option that you may wish to discuss with your gyn.

Good luck hunnie, I wish you well for a pain free future asap. xx

[Debra13]

Hello,

Just out of curiosity, you say that you bicycle. Has anyone taken into consideration that there may be 2 or 3 things going on. That’s kinda is what has happened to me. I had severe fibroids and that caused severe pressure and bleeding so I did have a partial hysterectomy. It did help the pressure feeling and the bleeding. I also have interstitial cystitis which I know you were checked for but the burning in the lower area is it in the vaginal and rectal area. If it is you may want to google a few things but because you said you bicycle I would look into Pudendal neuralgia. I have that for many many years now. I go for 2 nerve blocks a month. Just some advice because I know what it feels like to have doctors tell you it’s all in your head. The pain is real. I hope that helps. Deb. God bless. 🙏

[Aksunkist]

The past few days have been hell. I could not get ahold of my gyn due to the Easter holiday and ended up stopping my norethindrone without having a new bcp to take instead. This triggered horrible pelvic cramping (but barely any bleeding) and a monsterous migraine, resulting in me having to cancel two jobs (and feeling like a horrible person for doing so). My gyn says it was good to stop the meds asap and now i am on natural progesterone. If this step doesn't work then a progesteeone iud or hysterectomy is the next course of action.

I am seeing my pain doc on Monday and will ask about pudendal nerve blocks. My legs and feet tend to go numb fairly quickly and for a time nerve flossing helped with this but did not help with the pelvic cramping.

I also see my gyn this Friday and will be requesting a pelvic, uterus, bowel mri. I have had ultrasounds with nothing found.

I do agree that multiple issues are most likely causing my problems. The main issue is the pain. My periods are not considered 'heavy' by the docs standards so I doubt ablation would solve anything.

[Aksunkist]

Update: GYN visit went better than I had anticipated. It was as though before he hadn't had time to read my file or speak to the ANP who I had seen prior (same clinic). This time he did not even broach the subject of ibs and waa completely focused on this being a gyn issue. I had to, unfortunately, have a period prior to my visit as the office was closed for Easter on Friday and I had concerning DVT symptoms from the bcp. He prescribed me natural progesterone and I let him know on Friday that these new pills were causing severe nausea and headaches. He even noticed that I had lost weight in the month since I last saw him; pain, pressure, full quickly keeping me from eating or having an appetite.

I am now trying the natural bcp every other day. So far this is not working. I just end up with bad headaches and nausea the days after I take the pill (must be taken at bedtime so I wake up with the misery). I am giving them a couple more days before I ask for the last pill option open to me.

In the meantime, I am waiting on insurance to okay a pelvic mri. This is to be done before any nerve blocks or surgery.

I am just trying to hang in. At least he seems more on board with hysterectomy. I know it might not solve all my pain issues, but if even took care of half (and let me get off the bcp and pain meds), that would be enough. My last period was so awful I felt like I was dying. I almost went to the ER, but figured they would not help me.

I will keep updating as my story progresses. Hopefully, someone might benefit from all this misery.

[Aksunkist]

Update: So none of the alternative methods have worked and I have been approved for a hysterectomy TVH. Uterus and cervix will be removed vaginally with robotic assistance. I will be keeping my ovaries. This may not resolve 100% of my pain issues, but I will not have to deal with have the horrible I-want-to-die-kill-me-now periods any more or bleeding to death or taking bcp and suffering 247 side effects. My surgery is on 6/6/18.

[Aksunkist]

Update: post surgery and I am doing great. Pathology found fibroids, polyps, and chronic cervicitis. My GYN says none of this would cause the issues I was dealing with and has shrugged it off to bad genetics. The pain, however, is gone. Whatever the cause, improperly positioned, varicose veins (which I have had on my upper legs since childhood), something else, it is resolved by the evil organ having been removed. I am a month post op and recovering nicely. Oddly enough, my allergies are not as severe and my gastrointestinal issues are also doing better.