New here - need help please

I was recently diagnosed with Endo and PID. How I ended up with PID is a mystery to me. I've heard that it does happen even when you've both been faithful. Anyway, my transvaginal ultrasound showed that my left ovary is twice the size of my right ovary and they both have ovarian cysts. My doctor gave me 3 options, but 2 of the options he really doesn't recommend. One option was BCP, but this is not really an option for me because last year I ended up with a DVT in my left leg after Gall bladder surgery. He says that I am at a very high risk for another blood clot. The second option is having a D & C and transvaginal every 3 - 6 months. Another option that isn't really good for me because who wants to do this every few months? Besides that, it will put me through the stress of worrying each time it is done - worrying how the results will turn out. My third option is a total hysterectomy - everything goes!

Let me tell you, I am really considering the LAVH. I have been in constant stomach pain for several months. I went to 4 different doctors with this pain. Most were telling me it's the IBS, but I was sure it wasn't IBS pain - this pain was coming from my ovaries and pelvis. First I have to say 2 of the doctors did CT scans and found nothing wrong with my stomach. I swear they thought I was a nut! I am relieved in a way that now we actually know what is causing the pain! So this wasn't in my head after all - I was beginning to think it was, simply because of the fact I was constantly thinking about it and worried about it.

First I need to tell you a bit about my history before I go much further. In Feb. '06 I went to my primary doctor because I was having horrible stomach pain. He sent me to the hospital for a CT scan. There were no unusual abdominal findings, but they did find a 2 cm tumor on my left adrenal gland and they found a 2 cm cyst on my right ovary. As for the tumor on the adrenal gland, this is being watched carefully and I am on Spironolactone for this. So far I've had 3 CT scans and the tumor hasn't grown. In April '06 I had my gall bladder removed because of an (almost) blocked bile duct. A few days after this surgery I ended up in the ER with a DVT in my left leg. So now I am stuck with having to be at high risk for other blood clots for the rest of my life! Another problem I am having now is hair loss! This started around in July '07. Because of this I went to my endocrinologist - he did some blood work and my thyroid is low and my free & weak testosterone is high and the free & weak testosterone percentage is high! I have no idea what could be causing this. He says it's not the adrenal tumor causing this. All he did for me was tell me that he will run the same blood work again in Feb. '08. SWELL in the meantime I will have to just sit back and stay calm (like that's going to happen) and lose more hair!! I would like to know if anyone here has ever had this testosterone problem like I am having? I've actually never heard of this. Also, because of my new history of blood clots has anyone here had a problem with surgery because of it? My GYN doctor says he will put me on blood thinners a week or two before surgery. This sounds a bit dangerous to me. AND, when I do have the total hysterectomy I don't want to go the HT route. Have others had success without taking hormones? Right now I am just scared because all of this seems to be happening at once! I was hoping I can get the surgery scheduled before Christmas, but I need the clearance from my primary doctor first and now he's on vacation until Dec. 14th!

Please can someone answer some of my questions? I've been searching all over the place and I'm getting no where.

Hi Sassycat,
Were you diagnosed with Chronic PID or was there an Acute episode? Treatment for PID is complex and must be done correctly in order to completely eradicate the infection. Were you treated for PID as an outpatient or were you hospitalized?

The most common place where PID takes root is the ovaries or tubes. It can spread from there. I don't know about the Endo (I'm not an Endo-girl) but I sure know what PID pain feels like (I'm an Acute-PID girl). My pain was also coming from my ovaries and pelvis. It was a constant, aching pain that was severe at times.

The problem with PID is that the infection can cause adhesions. Adhesions are scar tissue. These adhesions can contain pockets of infection. That's why it's so important that PID be treated with the correct regimen of antibiotic therapy.

In addition to broad-spectrum antibiotics, prednisone is given to help the tissues better absorb the antibiotics, thus clearing some of the "pocket" areas in the adhesions. The prednisone also "finalizes" the tissues making for easier removal of adhesions during surgery.

If you have to wait for clearance from your doctor before you can proceed with surgery, talk to your doctor about taking a round of broad spectrum antibiotics combined with a 10 day course of prednisone. I'm not one to advocate the use of steroids, but in the case of PID, it makes a huge difference.

My doctor required this of me before my surgery and I was pain-free for the first time in a long time. The prednisone is not standard practice in cases of PID but it sure should be. Because the course is short (10 days) there is low risk of adverse side effects. I don't know how this would play out with your Endo and problems with blood clots. Talk with your doctor. The antibiotics and prednisone could help to resolve the pain at least from the PID, getting you through to your surgery. It's important to make sure the infection is cleared.

As for the testosterone issue, I have a similar problem. My levels decreased once my adhesions and tumor were removed, however, I still have high levels. I too take spironolactone. What is your dose? If you are still suffering from hair loss, your doctor may need to increase the dose.

I hope you find some relief from your pain soon. Some of the over-the-counter things I did that helped the PID pain included:

1. Electric heating pad
2. Probiotics (Acidophilus)
3. Drink lots of water
4. Mylanta
5. Peppermint capsules (for stomach pain - these worked well)
6. Rest

P.S. You don't have to get an STD to get PID. There are many cases where women who have never had an STD have PID. Over a million women in the U.S. are diagnosed with PID every year. There's no shame in having PID

Hi Zone_V,

Thank you so much for answering some of my questions. What really concerns me is my doctor didn't offer any antibiotics for the PID. When I got the test results last week I didn't know anything about PID, until I searched for it online that night. I was shocked to discover I needed medication and my doctor never wrote me out a script! I was a bit embarrassed when I realized how one gets PID, but a few of my friends reassured me and said the same thing you said - you don't have to have an STD to get PID. Strange thing is I wasn't hospitalized. As a matter of fact, my doctor never told me I had it until after I came home from the doctors I had re-read the copy of the test results and thats when I read the PID. I was shocked and I am still shocked! I'm calling my GYN doctor first thing tomorrow morning. My friends asked me why I wasn't on antibiotics yet.

That is the exact pain I am having and yes sometimes it is severe. I have no family support right now. My husband says I notice the pain more now because now I know what it is, but that isn't the reason why. It's because it seems to be getting worse - the pain. My SIL's say the same thing.

I swear right now I feel so alone and feel like crying. I feel as if I'm losing my mind. This was all so hard to suck in all at once. I mean when I see Endo, PID, ovarian cysts, and hearing that my left ovary is twice the size of my left one. I never expected this, BUT I have to look on the bright side - it could have been worse.

I take only 50 mgs. of Spironolactone. This all started with the hair loss. The hair loss is the reason why I went to my Endo doctor in the first place. I knew once I started losing hair that something wasn't right. I lost hair before, but that was brought on by a fast weight loss. I went on a low-carb diet and lost weight quickly. The hair loss stopped after only 3 months, but this time the hair loss hasn't stopped and it's been 4 months already. I am thinking maybe the cysts could be raising the testos. and causing the hair loss. I was never one that lost a lot of hair. Maybe less than a dozen after a comb out, but now it is pretty close to clumps. I don't hardly touch my hair now because it comes out so easily.

What testosterone levels were high with you? I mean was it the free & weak percentage and free & weak bound, like mine? My Testosterone serum is fine - if I remember right it was only 25.

Thanks for the info - I think I'm going to bed tonight with the heating pad

I'm shocked as well that you weren't given antibiotics for the PID. Did they run a CBC to check your white blood cell count? If so, what was the count?

I'll tell you briefly about my experience with PID. It was Chronic, went Acute, back to Chronic, and now Cured, post surgery. I was Chronic for about 20 years. During that 20 year period, the PID went undiagnosed in spite of yearly pelvic exams.

It became Acute when an ovarian cyst containing bacteria ruptured. I sought medical help because I was experiencing severe abdominal pain, constipation, and vaginal discharge. I was given a short course of Flagyl because they thought it was just Bacterial Vaginosis. Two months later, the symptoms worsened.

The abdominal pain was so severe I couldn't get out of bed. My temperature rose to 102 degrees. I went to the ER and was diagnosed with PID. CT and US tests revealed other problems. I had a dermoid teratoma on my right ovary, a complex cyst on my left, and several simple cysts. At the time of surgery 5 months later, the complex cyst was gone as were the simple cysts. My surgeon removed my tubes, which were completely damaged from the PID, along with the adhesions and teratoma.

Getting back the ruptured cyst and Acute story, I was hospitalized for 5 days on IV antibiotics. While the broad- spectrum antibiotics got me out of the hospital without surgery, the infection still festered in the adhesions causing additional symtoms for 5 months. During that 5 month period after my release from the hospital I was back to having Chronic PID.

I don't know that PID can really be cured until all the pockets where the infection hides are removed. I would have continued having PID, Chronic and or Acute, if I hadn't had the surgery.

I truly believe that PID should be treated with antibiotics *and* prednisone. That should be standard practice. PID also needs to be addressed with the right combination of broad-spectrum antibiotics. PID is tough and can hide out even with major antibiotic therapy. It's the prednisone that helps to kick it.

I'm glad to hear you're questioning your doctor's lack of treatment. There needs to be some treatment particularly if you are having symptoms. While those symptoms could be related to the Endo, I think it's likely many of the symptoms are due to the PID. It's an infection that causes inflammation. Since PID begins in the tubes or ovaries, it's possible your enlarged ovary is inflamed because of the PID. For example, my tubes were dilated due to the PID and there was inflammation throughout my pelvic region.

What are your symptoms besides the pain? Is there discharge? Is your body temperature elevated? I would highly recommend getting in to see another doctor as soon as possible. If your doctor blew off the PID, see someone else. If he's telling you that you have PID and he's not giving you adequate antibiotic treatment it means he doesn't understand PID. PID is a serious condition that needs to be treated even when it's not Acute.

If your pain worsens or you develop a fever, go to the ER. Educate yourself online about PID and the antibiotic treatments. There are special antibiotics used for PID. There are usually 3 or 4 different antibiotics.

Four months after my hospitalization, I was on another round of antibiotics along with 20mg prednisone twice daily for 10 days. This last course that I took before my surgery finally resolved the infection that was treated inadequately during my hospitalization. The surgery cured it and removed the damaged tissues that made me more susceptible to having another PID episode.

You may need to enlighten your doctor about the antibiotic/prednisone regimen. The doctors who were treating me in my area provided inadequate treatment even with all the IV antibiotics. I ended up going to a doctor who had experience with PID. Perhaps you can find someone who has experience working with PID. Chronic cases do not clear on their own and they can turn Acute so please get in to see another doctor.

I understand your husband's reasoning, but PID is an infection and the pain gets worse as the infection progresses. Your pain is real. Your tissues in that area are probably inflamed and tender.

I'm wondering if your episode in Feb '06 (the abdominal pain) was in part due to PID. It does come and go. Was a CBC done at that time to check your white blood cell count? Any thoughts on that?

I'm on 100mg of Spiro. I haven't had hair loss problems. My problems are acne, oily skin, facial hair, and PMS-related bloating. Spiro controls the acne, oily skin and bloating for me. I haven't had a hormonal profile done so I don't know my exact testosterone levels. The physical symptoms that I experience are common ones when there is too much free testosterone. It's entirely possible your cyst is causing the high testosterone levels. You have a lot going on which can disrupt your hormonal balance.

The most important things that I did to find a solution was to educate and advocate for myself. Before I found the right doctor, one Gyn that I interviewed kicked me out of his office because he gave me false information about PID and I corrected him. I look back now and am so glad I persevered. I'm glad my mother raised a stubborn girl. Thanks Mom!

You'll get through this. Just hang in there. Keep searching until you find the answer that feels right for you. If you have any questions or need an ear, let me know. -- Laura

Below is a list of my symptoms. Perhaps this will help to validate some of the things you've been experiencing.

My Chronic PID symptoms:
Abdominal bloating, gastrointestinal noise, gas, mild to moderate constipation, abdominal pain, pelvic pain, pain in ovaries, pain radiating to legs and hips, "burning" sensation in my stomach, vaginal discharge, irregular menstrual cycle, fatigue, dark circles under eyes. These symptoms were worse the week before and following my period.

My Acute PID symptoms:
All of the symptoms listed under Chronic, severe abdominal pain, swollen belly, fever ranging from 99 degrees to 102 degrees, night sweats, major constipation, heavy vaginal discharge that was tinted yellow and then turned green, pale skin color.

Hi Sassy,
You asked about HRT. I am on Bioidentical HRT, I would never use the convenional HT, it is very harmful and not effective. I suggesat doing soem reasearch on this.
I am scheduled for an EA in 3 weeks. Afterwards I hope to be relieved of my heavy periods and cramping. But if not I will have a hysto. I am 57. Meanwhile, I will continue on the bioidenticals; estradiol (a natural estrogen) and progesterone. These are helping with monthly migraines. I hope your doctor is open to this. If not and you still are interested, there are some online sources. Best of luck, Ellen

I am dropping in with information on endometriosis! We have several Endometriosis Resources you may want to read through to learn more about endo. The important thing to realize is that endo can be difficult to remove and a hyst is not necessarily a cure. It at all possible you should consider seeing an endometriosis specialist as they are trained to recognize the various forms of endo and have exceptional surgical skills when it comes to removing endo from the body.

I am sorry you have so much on your plate right now and need to make some big decisions. I would hesitate to rush into anything as a hyst is a major, irreversible surgery that is not without risks. You want to take time to understand what is going on and what might be best for you. And you should definitely consider at least a second opinion before deciding.

I wish you all the best and hope you and your doctors can work together to decide what is best for you! s

Thanks Laura. :-)

Hi Weiser,

Thank you. This is why I am doing my research about hysto's. I will be taking my time with deciding on what to do, but in the end, I really think it's going to be a total hysto - both ovaries are sick and not working and then the Endo. Thanks for the links on Endo. Good idea to look for a specialist :-)

Kathy